[Diabetes] General Chat and Support Thread

mr.silver

Dear all,

I would like to express my gratitude for including me in this group.

I recently received a diagnosis of diabetes at the age of 34. Initially, it was unclear what type of diabetes I had. However, upon discovering my condition, I made a serious commitment to adopt a low-carb diet, incorporating plenty of vegetables, and established regular meal times throughout the day.

After being on insulin for two months, I experienced a series of hypoglycemic episodes during a bout of vomiting. I sought medical attention and received an injection of medication in the gluteal region. Consequently, I lost my appetite for a day. Subsequently, it appeared that my pancreas began functioning again, as my blood sugar levels stabilized, leading me to discontinue insulin treatment.

However, after consuming three pints of alcohol, it seems that my pancreas once again started to fail. Currently, I am adhering to a low-carb diet and taking 6 units of Lantus at night, along with 2 units of Novorapid before each meal.

The hospital has now determined that it is type 1 diabetes. They have also informed me that the temporary restoration of my pancreas' functionality may have been a transient period. Naturally, I had hoped for a diagnosis of type 2 diabetes and wanted to ensure that I was not misdiagnosed.

A nurse informed me that she, too, is unconvinced, as my GAD count was only at 40. Moreover, there is no history of diabetes in my family.

To gather further information, I underwent a genetic test conducted by a company called Found My Fitness. Based on the genetic markers identified in my body, the test provided me with a list of diseases to which I might be predisposed, along with recommendations on preventive measures. Type 2 diabetes was frequently mentioned.

I am eager to hear any advice, thoughts, or personal experiences that any of you may have regarding this matter or the possibility of being misdiagnosed.

Thank you for your attention.

robinph

Odd that they didn't mention the honeymoon period after diagnosis where many newly diagnosed type 1s will temporarily have much reduced insulin needs, or sometimes need no insulin at all for a period of time. Not unusual at all for that to happen.

Gael23

I have been Farxiga 10mg and having read the leaflet in the box I have concerns about the side effects that are making me reluctant to take it.

is anyone else on this drug?

banie01

https://www.boards.ie/discussion/comment/120643063#Comment_120643063

I'm not on Farxiga, but I am on a similar drug from the same family, Jardiance, it's also an SGLT2.

Reading the leaflet and discovering that Fourniers gangrene was a rare side effect does focus the mind on whether or not you can manage your Hba1c without it 😉

I'm on it for easily 7yrs, possibly longer at this stage. It has been of benefit I feel in keeping me off insulin before my pancreas packed in fully. I've not had any serious side effects at all in that time. I did have a bout of oral thrush early on that my GP felt was related to the med. It cleared up quickly though. The only thing I'd highlight from my own experience is that it can leave you quite dehydrated if you aren't taking fluid in regularly. I know that weight loss is also a side effect, I've not had that but I have no doubt it's been of help in keeping my weight stable as my insulting intake has ramped up.

It also IIRC has long term protective cardiac benefit

I know Jardiance is a different drug, but both it and Farxiga are from same family so hopefully the above is some use to you.

On a separate but also Diabetes related topic.

I changed phones this week. Usually that means waiting for my Dexcom sensor to die or sacrificing whatever time remaining on current sensor and starting a new one.

The G7 doesn't have that issue,moving the current sensor to the new phone? Simple! Switch off the BT on the old phone and then 15 minutes or so later, pair it to the new phone.

GHOST MGG

https://www.boards.ie/discussion/comment/120643063#Comment_120643063

I have been on Farxiga 10mg for a few years now and i can tolerate it well, one thing to mention if your are ever getting a diabetic checkup and they also want a urine sample..dont be scared if the hospital/gp says they found sugar in your urine as this is one of the functions of farxiga.

Tony H

I’m on forziga for the last 3 months and having no problems, touch wood , I was on metformin for a couple of months and couldn’t handle the nausea,

my Hba1c has gone down to 43 from 59 and I have dropped about 6 kg in the last 3 months ,

my only problem is my B12 levels tanked but that could be due to poor absorption due to having an ostomy , but something to watch out for

GHOST MGG

https://www.boards.ie/discussion/comment/120655469#Comment_120655469

Metformin is well known for depleting B12 thats why a Supplement is always advised.

Tony H

https://www.boards.ie/discussion/comment/120655542#Comment_120655542

I’m on weekly B12 injections at the moment so hopefully that will sort it out .

Gael23

It says there’s a 1 in 10 chance of getting a urinary infection which is really my main concern, that’s a high chance. Also it mentions genital thrush in men

I took it following discussion with my GP and something I notice so far is I produce a lot more urine. This may eventually become intolerable but I’ll give it a while.

ohnonotgmail

https://www.boards.ie/discussion/comment/120655542#Comment_120655542

Really? nobody has ever mentioned that to me before.

banie01

https://www.boards.ie/discussion/comment/120657504#Comment_120657504

The 1st I've heard of it too and that's after 17yrs on some form of Metformin.

It is the correct advice though and UK guidance is linked below.

https://www.gov.uk/drug-safety-update/metformin-and-reduced-vitamin-b12-levels-new-advice-for-monitoring-patients-at-risk#:~:text=metformin%20can%20commonly%20reduce%20vitamin,factors%20for%20vitamin%20B12%20deficiency

hello2020

https://www.boards.ie/discussion/comment/120655542#Comment_120655542

thanks . I have lost 8 kg after starting Metformin and Dieting. How do I stop the muscle/weight loss?

ohnonotgmail

https://www.boards.ie/discussion/comment/120657853#Comment_120657853

Maybe it is one of the things they check when they take bloods and and only advise a supplement if required.

banie01

https://www.boards.ie/discussion/comment/120658501#Comment_120658501

It's not tested in my usual panel but I will ask for it to be added to my next lot.

Kremin

Hello,

I was told by a gastroenterologist I need to take CREON every time I eat in order to digest fat, carbs and protein correctly. Although I felt a little confused after the diagnosis due to the explanation being “oh you have diabetes, pancreas damage makes sense”, I was hopeful taking the enzymes when eating would help my symptoms (Nearly every time nausea, diarrhoea and very frequently crazy hypos if my digestion just doesn’t work at all).

before taking them my bs would plummet between 0-2hrs after dosing and shoot up around the 2.5 hr mark, for a while I was only taking insulin 30-45 minutes after eating which obviously isn’t ideal but it was the only way I could be certain I wouldn’t have a hypo every time.

Now, I prebolus for a lot of food as long as I take the CREON, some foods are still tough and I usually have to watch my bloodsugar closely for an hour or two after eating in case it randomly drops but for a lot of meals it’s a lot easier now.

the issue is that my bloodsugar is the only symptom which has gotten better. I still have to rush to the toilet constantly an hour after eating to either vomit or let it come out the other way. It’s making it so difficult to live because I’m afraid to even attempt eating while out of the house so 4 days a week I’m just not eating for the entire day until I get home.

The diabetic clinic are the only people I can get to answer the phone and they’re concerned because I’ve had two ‘severe’ hypos in the last few months. My GP has admitted they have no idea about CREON and advised me to chase the gastroenterologist, but they won’t even answer the phone after ringing them every day for 4 weeks straight now. It’s always just voicemail and no one gets back to me.

The diabetic dietitian has said that CREON needs to be tailored to fat content usually in food similar to dosing for carbs with insulin but I can’t even trial this or figure out the ratios I require because I was prescribed 4x 3 times a day. The pharmacy won’t give me more and I can’t reach the gastroenterologist to even adjust the prescription so my options are to just run out and not eat for a few days :(

Im so close to just going into debt to go private for a gastroenterologist but I have no idea what cost this would even be or how to even do this. Would I be kicked off the diabetes clinic in the public hospital? Back to square one getting gastro procedures done again and again from scratch? Not even sure if I am taking too much or too little… told to contact a doctor before stopping or if it gets worse but they won’t even answer the phone.

I do understand they’re busy people but I’m struggling to live my life and I don’t think it’d take much effort to adjust my script or advise if I need to stop taking it :(

sigh

Xofpod

https://www.boards.ie/discussion/comment/120627687#Comment_120627687

https://www.boards.ie/discussion/comment/120626400#Comment_120626400

Also surprised - sounds like a classic honeymoon period situation, which (I remember being advised) is very common in newly diagnosed T1 diabetes.

Best to keep an eye on it and stay in regular contact with the clinic/hospital team over the next few months. Most likely the situation will clarify itself fairly quickly.

Also, a T1 diagnosis isn't the end of the world. Sounds like you're making sensible changes already; you'll be well able for it.

banie01

https://www.boards.ie/discussion/comment/120659280#Comment_120659280

Hi Kremun, sorry to read of your issues in getting to grips with CREON. I have no experience with it myself, but my Sister in Law does and I've asked her to take a look at your post. Hopefully she can come back to you with some advice.

Gael23

I’m struggling on the Forxiga. I need to urinate almost hourly and up to. 3 times at night

ohnonotgmail

https://www.boards.ie/discussion/comment/120689225#Comment_120689225

Ask your GP/Consultant if you can switch to jardiance instead. It does a very similar job but has less side effects.

Gael23

Im only on it for 2 weeks. Do you think I should give myself a little longer to get used to it?

ohnonotgmail

https://www.boards.ie/discussion/comment/120691284#Comment_120691284

give it a month or two.

ohnonotgmail

i opened a new box of strips this morning. took a look at the expiry date. Mar 23. dispensed in February. looked at another box dispensed in March. expiry Mar 23. looked at a third box. dispensed in April. Expiry Mar 23. this is from a pharmacy i stopped using 2 months ago. very annoyed. i will be bringing them back for replacements.

kozak

Hi all

Have diabetes 2 and obesity for many years, now endocrinologist consultant recommends bariatric surgery.

Keeping balanced diet and portion control, doing walking, swimming, but unfortunately not much weight loss recently.

It would be interesting to hear from people who had bariatric surgery 3-4-5 years ago - is weight loss sustainable in long term? Any side effects?

Thanks

banie01

Had my DRS screening in early June, have already had both a letter back confirming a deterioration and advising that I'm being referred to the Digital Surveillance unit.

As well as the advisory letter I also received the appointment for the follow up and it's before the end of the month. That I am pleasantly surprised by the joined up nature of the service is an understatement.

This is the 2nd time I've had a referral for further investigation via DRS. The 1st time was a referral to local hospital opthalmology unit. Was assessed 3 times and discharged back to DRS.

This is my 1st interaction with the Digital Surveillance unit. Hopefully the retinopathy is still as close to incipient as possible. I knew it wasn't going to get "better" but hopefully I can continue to keep it under control.

1 thing I will say tho, is that this should drive home how important managing BG is in diabetes management. I'm diagnosed 16yrs or so now and have had only few Hba1c that were high and even then never above 10%. My control has always been quite tight apart from instances where I was injured or immobile.

TLDR: Stay on top of your Hba1c and manage it as well as you can.

Alanstrainor

https://www.boards.ie/discussion/comment/120722353#Comment_120722353

The main thing is catching it early and being able to react before things progress further. And I wouldn't be too hard on yourself either, 16 years is a long time and there are other factors that can make some people more prone to complications like this. Here's hoping everything works out ok!

banie01

https://www.boards.ie/discussion/comment/120722391#Comment_120722391

I'm not too concerned, odd as that sounds. There's not a lot more I can do to improve my control and as you've said, the earlier caught the easier remedied or at least abated.

Main thrust of my post was I suppose, take care of your health whilst you have it.

The DRS scheme, the LTI and in my own case a medical card all make a huge difference. I sometimes see the horror stories that US diabetics have to deal with and thank the stars for my being Diabetic in Ireland rather than there.

banie01

https://www.boards.ie/discussion/comment/120693397#Comment_120693397

Just on this, I know that onetouch were allowing for an extension beyond the printed expiry date on their test strips. A combo of COVID delays on materials and Brexit delays on distribution hit them. Similar situation came to pass with Dexcom, received some sensors beyond their original expiry and Dexcom confirmed that they were extending expiry dates after additional sample testing to help address shortages.

Gael23

Went to consultant yesterday because I just couldn’t handle the Forxiga any more. I’m passing urine 10 times a day and 3 times at night.

He wants me to reduce the amount of sugar in my diet. He thinks it’s new response of my body to excrete glucose so if I consume less sugar it should slow down. So going to give that a go for another while

ebbsy

Back from Newcastle again after getting my lastest 2 Noctura 400 masks from the optician.

Still stable. No changes.

They have a new eye camera there now that can assess fluids etc in the eye. Very similar to the Eye and Ear Hospital here. Very useful.

They now have this device in several major eye hospitals in the UK and it makes me wonder why its not over here.

I had my last eye bleed 4 years ago. I started using the night mask a few months before that.

So it must have some value.

ohnonotgmail

Just back from my consultant appointment. 22kg weight loss and a hba1c of 43 (6.0 in old money). The signs of diabetes in my kidneys are now gone. All thanks to 12 months on Ozempic. Consultant was delighted and so am I.