Update

[s'nic]

Hi, a quick update. I had full bloods done on 18 feb and the results other than kidneys are good

With my diagnosis in Feb 2024 as a starting point
- HbA1c was 42 ... 40 in jul 2024 ... it's now 39

No meds, purely through diet modification and cholesterol reducing yogurts ...
- serum cholesterol was 7.7 ... 4.4 in jul 2024 ... it's now 4.6
- serum triglycerides was 2.4 ... 1.1 in jul 2024 ... it's now 0.9
- serum HDL cholesterol level was 1.8 ... 1.4 in jul 2024 ... it's now 1.8
- non HDL cholesterol level was 5.9 ... 3.0 in jul 2024 ... it's now 2.8
- total cholesterol : HDL ratio was 4.3 ... 3.1 in jul 2024 ... it's now 2.6
- serum LDL cholesterol level was 4.8 ... 2.5 in jul 2024 ... it's now 2.4

My most recent kidney result has dipped again, which is not so great (under 45 puts me in the next level of serious)
- eGFR was 46 ... 54 in jul 2024 ... it's now 49

I've focused on adapting recipes to be reduced carb/sugar and used cold pressed rapeseed oil (low saturate and not UPF as there is no heat treatment or chemical extraction)
My low fat / reduced carb cheesecakes are working well, and in cake making I've completely switched to using oil and went so far as to adapt a cake recipe to no butter and no egg 😎 (shoving fresh fruit / berries / veg in them also helps reduce total carbs).
I even successfully adapted a lemon tart recipe (normally a butter pastry and filling loaded with double cream) and made a very low fat and reduced carb version

On the minus side I'm still completely lacking support and my resting heart rate is still dropping (it hit 36 BPM one night in january). At end of october I attempted to stop my weight loss to address this, but have lost another 6lb since then.
I'm still getting liver pains, and really feeling I need clarification / dietary advice for my liver / kidneys and some form of daily target for carbs /proteins. Unsaturated fats are an easy fix for missing calories, but idk if I should put an upper limit on those. I have an appointment with a dietician on monday, so I'm hoping they can assist me

I'm also struggling with depression which is impacting my willingness to cook and I worry that the doctors will not take my drop in heart rate seriously as I track it via my garmin watch while sleeping. Clearly it isn't a medical device, but it does record a definite trend over time recorded on the same watch/software. However I was able to show my doc a video of my pulse oximeter showing my pulse holding steady at 42-43 BPM sat upright at my desk. (Comparing my pulse on the oximeter and my garmin app actually shows identical readings, with my phone app updating slightly faster than the oximeter.)

Ok, this turned into an essay. Sorry - have a gold star if you read this far

 

[Proud to be erratic]

Gold star taken, thank you @s'nic!
Nice results, despite the kidney functions and sorry to read about your struggles with depression. Is this a seasonal thing? I have an older relative who gets this annually, brought on by the short daylight hours.

 

[s'nic]

Gold star taken, thank you @s'nic!
Nice results, despite the kidney functions and sorry to read about your struggles with depression. Is this a seasonal thing? I have an older relative who gets this annually, brought on by the short daylight hours.

No, not seasonal, mostly health worries, lack of energy/stamina, and an inability to keep on top of things.
I'm now working on a self-devised calorie controlled diet to try stop my weight loss - bearing in mind my average monthly resting heart rate will vary anyhow ... so it's going to take time to know out if a more stable weight / slower loss will prevent further decline in my resting pulse.
And I'm hating this. At the end of each day I'm looking to see how many more calories I need to eat to avoid a calorie deficit (based on my watches average daily expenditure). But this means eating when not hungry, just to get some calories
I'm just glad I invented a high fat (low saturates), reduced carb, high fibre biscuit - they are a super fast way to add calories at a days end.

 

[s'nic]

Oh, there is a slight seasonal impact - I'm very sensitive to a low background temperature - it makes me feel ill, so I always feel worse in winter.
Trying to do food shopping in a supermarket is hell, I get so cold all i want to do is leave the shop. But for fresh foods I don't like online ordering, so I want to go in, grr.

 

[JITR]

@s'nic
Thank you for your explanation. The reduction in your LDL level is striking. What would you say were the keys to reducing it. Sorry if it seems I'm asking you to repeat yourself, just trying to clarify.

 

[s'nic]

@s'nic
Thank you for your explanation. The reduction in your LDL level is striking. What would you say were the keys to reducing it. Sorry if it seems I'm asking you to repeat yourself, just trying to clarify.

I devised daily targets for myself for fats, saturated fat, carb, sugars and proteins
My targets were based on my health including prediabetes, high cholesterol, and ckd. I also have focal fatty liver (not diffuse ... but idk if that would affect methods to get rid of it).

I use rapeseed oil as my choice based on lower saturates and a good balance of omega 3 & 6. I only buy cold pressed so no heat/chemicals are used in the oil extraction.
And I have a supermarket brand equivalent of the benecol yogurt drink each day, and have oat bran (slightly lower carb than oats) with my yogurt and berries for breakfast.

I did not count calories, but took an average calorie expenditure from my watch to base my calculations on, then did some math based on this ...
USA sources & the WHO say 10% of daily calories as sat fats. The WHO says 30% or less from total fats
The American Heart Association says 5 to 6% of daily calories as sat fats.
Diabetes: 130 carbs or less daily (bearing in mind I had prediabetes)
uk - general recommendation for protein is 0.75 g/kg body weight
uk - one new technique for general protein suggested 1-1.2g/kg body weight
a usa recommendation for protein in ckd stage 3 was 0.8 g/kg body weight

So I basically set myself a personalised max saturates / carbs / sugars / proteins a day, and generally tried not to exceed my calculated maximums. As I lost weight my calorie expenditure changed, so I just updated my targets (yay for spreadsheets).

I'm very number driven ... so setting targets as guidelines worked for me. If I exceeded them - whoops, but I focused on the longer term aim, not a day here or there 🙂

 

[everydayupsanddowns]

Lovely to see you again @s'nic

Well done on your cholesterol reduction. Sounds like you are working hard at slowing your weight loss, while still keeping things BG friendly.

Sorry to hear about your depression. That can add significant challenges. Do you have strategies to try to help you with it? Do you find medication helps?

 

[JITR]

@s'nic
Thank you so much for your brilliant explanation.

My latest HbA1c was back down to 35 but the GP did not like my LDL and total cholesterol. And I am a bit wary of the CKD2 indication.

Not in your league, it's still a bit tricky to balance carbs and fat once you fix a protein level and aim for a weight target. Hope yours goes up soon.

 

[s'nic]

@everydayupsanddowns
Thank you 🙂
I've had issues with depression off and on for most of my life (I blame the toxic environment I grew up in). I tried medication when a very bad employer pushed me to the point where I had a choice of quitting the job or killing myself, and I figured no job is worth dying for. I was on 4 different antidepressants over the course of a year.
I later found out that employer was on the government employment agencies blacklist 🙄
The result of the depression meds was 1 year of sleep deprivation while still being depressed, also putting on a lot of weight due to the meds. On the worst med I would manage 2 hours sleep, get up, be exhausted and unable to face doing anything, and after a few hours try sleep again. I ended up trying to sleep about 3 times a day and spending my awake time exhausted and good for nothing.
I live alone and need to be able to function. I knew if I went back to the doctor they'd just want me to try another med and I was done being a guinea pig, so I just quit the meds and as an interim measure I tried some st john's wort while my body got used to no meds.
I recognise that depression meds may be good for some folks, but I've never been a good sleeper, and anything that destroys my sleep is simply not an option.

 

[s'nic]

@s'nic
Thank you so much for your brilliant explanation.

My latest HbA1c was back down to 35 but the GP did not like my LDL and total cholesterol. And I am a bit wary of the CKD2 indication.

Not in your league, it's still a bit tricky to balance carbs and fat once you fix a protein level and aim for a weight target. Hope yours goes up soon.

Thanks, it is concerning trying to ensure kidneys do not degrade while trying to balance carbs and fats.
I hope you can find a good balance for your carbs and fats.

I remembered after I posted - I found that using the WHO figure for total fats while keeping carbs/proteins lower prevented me getting sufficient calories in the day.
My fix was to focus on the saturated fats and proteins targets and look at the mediteranean diet which if I remember (off the top of my head) was said to be better for ckd than the DASH diet.
Trying to cut through all the mash up of diets on the web, the mediteranean diet is 40% fat, 40% carbs and 20% protein. This immediately gives me more wriggle room on total fats!

I never set unbreakable rules, no point setting yourself up to feel like you are failing.
Instead I take the broader view, 1 day higher here, another lower there. If it averages our roughly ok and blood tests are ok, then that works for me.

 

[silver minion]

Glad to see you posting again. Congrats on your recent HbA1c and lipids results. Sorry to hear that your kidney function is not so good and trying to juggle your dietary requirements can be stressful in addition to living with depression.
I hope your appointment with a dietician is positive and helps with your liver and kidney function.
Your low heart rate does sound concerning, especially if you have no energy. Hopefully the doctor will arrange further tests and monitoring. Is it also affecting your blood pressure?
Sending you virtual hugs to get through this difficult time. You may live on your own but you are not alone.

 

[s'nic]

Glad to see you posting again. Congrats on your recent HbA1c and lipids results. Sorry to hear that your kidney function is not so good and trying to juggle your dietary requirements can be stressful in addition to living with depression.
I hope your appointment with a dietician is positive and helps with your liver and kidney function.
Your low heart rate does sound concerning, especially if you have no energy. Hopefully the doctor will arrange further tests and monitoring. Is it also affecting your blood pressure?
Sending you virtual hugs to get through this difficult time. You may live on your own but you are not alone.

Hiya 🙂 I only got the blood results last week and over the last 2 days have been thinking .... hba1c is based on last 3 months of course ... but is creatinine (for eFGR) based on a shorter blood lifespan? I think kidneys are more based on a here and now test, which would mean whether they were stable or not could only be assessed over a number of tests.
I'll have to confirm that, but it looks like I need to pay for a private 6 monthly test once a year if the nhs is only doing yearly checks. Assuming what I think IS correct then atm it seems they are fairly stable despite the dip.

Last august I had low blood pressure, and had brief dizzy spells (extremely brief in a 'what was that, oh it's gone' way).
I've raised the issue with my doc as I suspect it could affect blood profusion of important bits of me apart from a dizzy brain .. eg kidney and liver. I also suspect that a reason I'm sensitive to low background temperatures is my heart rate/blood profusion.
I was supposed to see a cardiologist last summer, but after the heart monitor results he decided my doctor could increase my meds if my ectopics were bothering me and he didn't see me or speak to me.
The low pulse combined with low blood pressure were also causing increased heart disturbances, and increasing my beta blockers would have slowed my hear further 😱 A change of meds increased my blood pressure a bit, and got rid of the increased heart disturbances, and I'm still waiting to see a cardiologist after being re-referred.

As you can imagine I'm rather frustrated and fed up with things.
Oh this is another thing - I was entitled to vaccinations for the flu and covid, and AGAIN my surgery did not contact me. When I chased them they said they'd finished vaccinations and they would phone me sometime after xmas, if I heard nothing by end january I could get in touch.
So I phoned up the covid vaccination team and arranged a vaccination myself on 23 december. Got home and realised they hadn't offered a flu vaccine, phoned about 3 chemists and got a next day (24 december) appointment for that. Sheesh!

 

[silver minion]

Doctors surgeries.... huh...good job you are so proactive. My hubby has AF so takes medication for rate and rhythm control. It doesn’t stop episodes but reduces the severity. I know after an episode he is exhausted as his heart rate and BP are all over the place. No wonder you lack energy. Hope you see a cardiologist soon.
Take care

 

[s'nic]

@silver minion
Thanks, my chest feels bad in cooler environments (probably due to blood flow/circulation - idk).
Vibration makes me feel bad too - in a supermarket I make a point of grabbing the newest shiniest trolley in the hope of less vibration off wonky wheels. There have been times I just need to stop pushing a bad trolley until I feel a bit better.
The rest of the time it's bearable even if I can feel an erratic beat, and being aware of my triggers is useful.
An elevated resting heart rate (but still below the regular 60) makes me feel exhausted just because I'm not used to it 🙄

 

[s'nic]

I just saw a dietician today, she figures I've done brilliantly so far (which is reassuring).

Due to trying to eat more to keep my weight up I'd ended up eating an average of 144-154 carbs a day over the last four months.
Given that my hba1c had reduced by 1 point to 39 it seems clear that this amount is ok for me.
She doesn't think I should lose more weight, and we've agreed that I can try increase total fats and carbs slightly in order to get more calories and ensure I halt the weight loss.

She is also going to look at finding some dietary information to help me out as regards the focal fatty liver and the ckd. If I am concerned with continuing loss I can contact her, otherwise she will see me again in about 3 months 🙂

 

[silver minion]

That's really positive news @s'nic Your dietician sounds really helpful and supportive of your efforts.
Keep us updated with your progress

 

[s'nic]

I'm just glad I got to see a dietician, I've been juggling a lot of dietary balls, and while it seemed to be going well I really wanted a sanity check on what I'm doing - spoiler alert - my sanity is hanging by a thread .
Being able to go back in 3 months feels like a huge bonus - it gives me time to track the effect of a higher calorie intake on my resting heart rate

 

[everydayupsanddowns]

Being able to go back in 3 months feels like a huge bonus - it gives me time to track the effect of a higher calorie intake on my resting heart rate

Good to hear you have a follow-up in the pipeline. Hope things are moving in the right direction at your next check 🙂

 

[s'nic]

I finally feel I'm finally making some progress!
My dietician still hasn't got back to me with the requested info on fatty liver and ckd. I am expecting a 2nd face to face with her tho.

However I joined a cooking forum, and while discussing diet/health a forum member's response included the line '... so long as you haven't been starving yourself'. BOOM - lightbulb moment 😳
Being a data nerd I had the numbers in a spreadsheet. Between sept 2021 and oct 2024 my average daily food was 428 - 580 grams! Because I was so distracted by trying to look after myself/my home & car I obviously wasn't focusing on what was happening around food other than 'ok managed to get eating done'. As time went on I guess not eating much due to lack of hunger and lack of energy to deal with cooking became the norm.

Some may remember me mentioning I don't get hungry.
While Anorexia Nervosa is an eating disorder, Anorexia itself is a medical condition where you lose your appetite. It's now !00% clear I have anorexia,and it's highly likely I've had it since 2021 or even earlier.

I got covid in march 2020, and basically ended up unable to look after myself properly (especially food prep, cooking, clean up). I lost 19lb during 2021 without dieting and while eating any food I could just pick up and eat without food prep. I lost another 8lb over the next 2 years. Then in 2024 I switched to healthy eating and lost 49lb without dieting. In the summer of 2024 my heart palpitations worsened, BP became very low and I experienced dizzy spells..

Tho I started off overweight, I suspect my poor diet from 2020 to 2024 caused some level of malnutrition (I kept getting repeated throat infections in 2023).
Also this lot made me think ... it seems the doctors linked my ectopic heartbeat to covid (my heart is healthy), but I had no awareness of any heart irregularities originally.
In the summer of 2020 I could lie on my left side comfortably, but later that year doing so would cause feeling of discomfort (it aggravated my heat rhythm), I can date this as Welsh Water wanted to dig up my floor that summer.
So ... was my heart rhythm affected by diet or covid and might it rectify itself? I have no clue, but will be monitoring it.

My metabolism has clearly suffered. In january my Resting Heart Rate (as measured by me Garmin watch) hit an average low of 38.9 beats overnight (with a low of 36). It's since made small incremental gains every month and my current avg overnight RHR is 40.6 bpm.
I think it's going to take a long time for my body / metabolism to recover!

 

[silver minion]

Good to hear that you are making some progress @s'nic and that your health is starting to improve. I hope as your appetite increases and the small changes accumulate it will help your ectopic heart rhythm settle back within a normal range.