Hi all.
Some of you know the struggles I have been having lately. I just wanted to vent and possibly get some feedback on everything.
I don't know what's normal and what's not anymore.
My approach had been to eat within the 2-3 rise rule and take whatever meds necessary.
(sorry this is its a long read)
I went to GPs for fluid retention and what I thought was high blood pressure.
I had been trying to loose weight (and had lost about 12kg and unknown weight loss beforehand) and then I was suddenly gaining weight which I assume was the excess fluid.
Symptoms making me think was high blood pressure was frequent headaches and migraines, floaters in vision, feeling like my heart was pounding. Feeling rough overall.
It was the halt of the weight loss that made me stop ignoring stuff and just go to get seen and not the other symptoms.
Thirst and frequent peeing was a thing but wasn't really on my radar as an issue.
I had pre-eclampsia with daughter's pregnancy so experienced high blood pressure before.
Headaches had been ongoing for a few years but the other stuff, I would say about 4-6 months prior maybe?
BP was 160/100 ish at nurse and she took bloods.
A gp appointment was already booked for the following week so no bp meds to be prescribed until I had seen gp and blood results were back in.
I had got a text between bloods getting done and seeing the GP saying I had a prescription for folic acid to pickup so actually kinda breathed a sigh of relief and assumed that was all that was going on.
Got to the gp appointment and started talking about the fluid build up and bp and he scanned my blood results and he asked me how my diabetes was going. Awesome way to be told a diagnosis right. (hba1c - 91 - 14 on the meters)
He did the run of mill questions once he realised this was all news to me, told me to diet and exercise
🙄. Full of helpful info right there.
Anyway was given metformin, some creams for blisters I had on my legs from the fluid build up and cream for what he said was psoriasis on my face and low dose ramipril. He said getting my BP down should help with the excess fluid.
Was booked in to see the nurse again for another bp check for the following week and sent on my way.
I suppose my story probably compares to most on here which was panic, scared to eat anything as I didn't know anything etc etc. Started metformin and the other meds and creams, read a lot off the interwebz which left me more and more confused.
Had the bp review and had a chat with the nurse and given the standard bunch of booklets and was told to come here to do the learning zone. BP still the same so booked in again for another 2 weeks for review.
I hit the site and was reading the forums here and I figured I could follow the sound advice of testing my food tolerance and try and eat to that and fit it into weight watchers plan for weightloss which I had been doing. If I have a tiny bit of wiggle room in a diet I have more success longer term. (spoiler gliclazide is slowly undoing this work
😡).
I got a meter and a bp monitor and got to testing.
I would say average bg was 6-8 and seeing 11 on the meter was pure panic (oh how things have changed).
As for BP, my home readings were much much better (115 / 70 ish). Long story short here, spoiler - I have white coat syndrome where my bp is actually okay but I test higher in clinical situations, my home monitor lines up with the nurses readings so high bp taken off the table now.
I also mentioned the food testing and asked if they wanted any of the readings and she offered me a meter and test strips on repeat.
Anyway by the start of December metformin wasn't agreeing with me and was to give it a break for a weekend and reintroduce. That failed and was switched me to 1 x 40mg gliclazide (the one that helps you to just make more insulin yourself - I call it turning on the tap).
I had another bp review the same week and during the appointment someone else was called into check my legs/fluid so had a quick review of my meds and immediately doubled my gliclazide dose as it was too low given my hba1c. Was put on water tablets.
Over the next few weeks waking readings were okay but slowly starting to go up, the same previously ok foods were starting to spike me higher and longer one day and the next they were okay again.
By just before Christmas I was concerned and called GPs again. Was asked to try slow release metformin but only 500mg. Xmas to new year my tummy wasn't fantastic but was determined to go over the first couple of weeks to see if it settled. (gliclazide still in the mix)
bg was still getting more erratic. Good days and bad days were becoming more noticeable vs just bad mealtimes. Bad days waking readings were hitting the low to high teens and good days were about 10.
On bad days I would end up just having some cold meat for breakfast / lunch to let levels come down themselves as the gliclazide would only do so much. Would often take until 5pm to get to somewhere in single figures and I could have dinner. Still massively limiting carbs with evening meal. (eg meat veg and a couple of baby potatoes or microwave rice that doesn't do much to my bg).
Called back again in the new year to let them know metformin wasn't working out. Spoke to the pharmacist (who apparently handles most T2 patients) and he decided introducing Empagliflozin was the best option. (the one where it stops your kidneys sending glucose back but instead makes you pee it out).
Numbers almost instantly dropped and waking was usually around the 8s and wouldn't push past 10 at all after meals and would generally return to there or even down into the 7s before the next mealtime.
A couple of weeks in numbers had started to creep once again. Diet pretty much unchanged. However, eating to my tested +2-3 rise was/is a disaster as it was even more inconsistent. Sometimes it is within the rise but other times it just ends up out of control and takes hours and hours to come down again. Noticing not just the odd rubbish day but a few days in a row before seeing some good ones again.
Waking had gone back to 10-13 most days.
End of Jan hba1c went from 91 to 61. Was worried the good outweighed the bad. Really doesn't help to be heard when their test don't reflect what you and your meter are saying.
That brings us up to this week.
I'm doing a libre trial and using diabox that has been and calibrated and spot checked.
Have confirmed the bad days are now just stay steadily high. Over the last lot of conversations with issues I was always being told how a fingerprick doesn't tell the whole story and its probably just spikes.
🙄
The first full day of using it I was 0% time in target which the upper limit is 9. For the last 6 days of using it diabox
(which tends to be more accurate with the highs) is showing 20% in target.
Libre is a little kinder with 47% but is way off when fingerpricks say I'm high but fairly on point with the normal
🙄.
So another phone call...
Gliclazide has been doubled. I can have 2 x 40mg twice a day (from 1 x 40 twice a day) and allowed to play around with the dose.
Yesterday was the first day of dosage increase.
Started the new dose (6am) with a finger prick of about 13 so just had some sliced cold meat for brekkie to give things a chance.
Numbers were steady lowering but had to go out into town about half 9.
Was in the 6s by 10.30am and felt pretty terrible and was still dropping (I know not hypo but much lower numbers than I'm used to).
I had a few mins to get the bus home (40 min trip) so made a (probably poor) call to get a steak bake from gregs to try and raise them a little bit (30g ish of carbs). I really didn't have options to get much else with location and time and didn't think JBs were needed but some normal carbs would be better.
Since it is a new dose I wasn't sure how much more effective it would be and didn't want to still be dropping while traveling.
Saw a rise up to about 8-9 over the next 90 mins, levelled off and saw the start of a fall showing (and felt much better). Was planning on no carbs for lunch and see where things settled.
Then my alarms started going off with a further fast rise up to the high teens. The highest point was about 4pm (6 hours after eating) and caught a 17 on finger prick and 19 on diabox at different points. Once I saw it was finally on the way down, I fell asleep and sensor indicated I evened out around 9pm in the 6s and a flat ish line until 11.30pm when I woke up and did a 6.9 fingerprick to confirm.
Was too late for 2nd gliclazide dose so flying solo. Had instant noodles for dinner (one of the "normally can eat that barely moves my numbers" things) and have just had another trip into the teens and has been steadily stayed around 11-14 for the last 3 hours. Meds probably not being effective at all at this point so I should totally account for that. Have taken morning meds now and they are coming down again.
So usually I'm pretty consistent with medications and timing of them. I kinda messed up with sleeping when I did yesterday but was just exhausted.
Overall, mentally I'm exhausted.
I try and be very careful with diet but its like playing roulette with my bg with the same foods.
Are such big inconsistencies normal?
Was the steak bake yesterday a completely dumb move (although tasty) and that is the entire reason I spiked so long and high (+12 with a peak at 6 hours)?
I'm tired of feeling like I am harming myself by (for example) having a weetabix for breakfast. I know there are other things I could have. Some days it is totally fine, others bg is just trashed. Whatever way my tummy likes that bit of fibre
😉 But still, I am feeling bad for eating the blandest breakfast cereal to make sure my guts stay happy.
I never used to have food anxiety but it is really is starting to be a thing.
I came into all of this with positivity and determination to manage what I could and take medications to keep things under control. I feel like I get some control and then its like a switch gets flipped and things go downhill again and I inwardly groan at the thought of fighting to be heard at the GPs.
I come off the phone from their appointments being made to feel like I am overreacting. The other day I was told 11-14 all day "wasn't that bad". Clearly she's never been there at dinner time with a banging headache knowing it will be a disaster if you eat the wrong thing or even eat the right things and it all goes to hell anyway. I know it can be higher/worse but its so insulting and belittling. I rarely go to the gp for help and when I do I fell like I'm wasting their time afterwards.
The peeved off part of me wants to sod it, eat "normal person" stuff and let my hba1c go wild so they will actually take things more seriously and the sensible part of me says don't be so silly - you will feel like crap and potentially cause more problems.
What happens with patients who get put on metformin and just get on with normal life and largely ignore even eatwell advice?
Do things spiral as fast or do they just not know? Am I expecting too much from medication and limiting carbs to be effective?
What I perceive to be happening. My pancreas is a toddler. Some days with some gentle encouragement (aka meds), it behaves for the most part and everyone is happy. Other days it is a day filled with tantrums and flailing about screaming loudly where no amount of coaxing will get it to behave itself and then suddenly the tears dry up and it is all smiles again.
Advice, thoughts, feedback welcome
🙂
(also thanks to
@rebrascora for listening and encouraging me to write this post xx)
