Still wading in the mire

[Pollyanna]

Because when I had to start on this road I searched for advice and the diabetes.org site advises fruit and veg for a balanced diet so I eat a portion of fruit a day such as a lemon, satsuma, small apple, pear, plum, blueberries, etc.. I prefer under ripe not so sweet fruit.. I hate anything sweet... And lots of leafy veg, brassicas and salads.
Have tried eating twice a day bf and dinner but then I get the hot sweats in between... Have tried doing as I used to, late brunch late dinner but was so tired I struggled to exercise...
,

 

[Browser]

That specialist need an education in the different types of diabetes - a short sharp one.
The only thing I can suggest to try to lower your BG levels with the insulin you are producing is to lower your intake of carbs.
I got down to normal figures eating 50 gm per day, but am lower than that now to try to lose weigh).

Do the pounds not fall off at 50gms carbs. per day?

 

[Pollyanna]

I don't want to lose any more weight.. 5 stone in 8 or 9 months without trying is enough lol

 

[Drummer]

Do the pounds not fall off at 50gms carbs. per day?

Not for me - not even at 40 gm per day. I have always been told that I ought to be losing weight on what I eat, but I never have lost weight easily.

 

[Docb]

Hi Pollyanna, why are you taking pregabalin and amitryptyline? I ask because I took them for some time a while ago for neurovascular pain and I am not convinced they did anything useful. Seemed to work for a month or two and then things went back to where they were. I'm thinking placebo effect. Stopped taking them and really did not notice the difference. Stopping amytriptyline was a bit of an adventure - weird withdrawl symptoms, technicolour dreams a hippie would have paid good money for!

I'm pretty sure that there is something other than diabetes going on in my system but despite much investigation nothing has been found. I like to think that its because the tests used are only really good for finding things when they get big and are not very good at finding things whilst they are developing. "They", probably in frustration, talk about stress and stuff like that and feed you things like pregabalin, gabapentin and amytryptylene which the cynic might suggest are expensively developed, but ineffective, anti-depressents looking for a use. Anyway, you have my sympathies. I think I know where your are at and it is very frustrating.

I have got my carbs down to about 80g/day - not as low as drummer but lower than you. I am pretty sure that if I was up in the 150g/day area I would be back with blood glucoses in your territory. Even with this intake I get spikes up to around 10 and I can usually but not always trace them to something - a cappuccino, an apple or a couple of oat biscuits for example. Maybe if you took another look at what you are eating and see if you could trim your carb input a little further, that might help with your BG levels.

 

[Northerner]

Hi all... Well it been a while and still wading.. Or actually am wading again.. It been a long process and thought I was winning.. Or at least if not winning was getting to the finish line.
The pain problem etc turned out to be an abdominal wall hernia... Basically along the old internal cesarean scar.
As for the diabetes 'the NHS only recognises type 1 and type 2 and anyway the treatment for type 1.5 would be the same as type 2' (quote from specialist)
So... Am on metformin 3 x 500 daily, pregabalin x 2 daily, amitriptyline x1 daily.
Supplements... ALA, calcium with boron vit d and magnesium, B12 daily, iron x 3
weekly.
I cannot get my fasting level lower than 9.2...have tried altering the times I eat and medicate ... It just will not come down... I wake around 3am wet with sweat, I dont mean like a hot flush.. I remember those.. this is like coming out of a hot swimming pool... I am drenched and the bed is wet through, and at that point my blood sugar is high.. In the 12.5 range, by breakfast time it down to the 9 range and am frustrated and full of despair... 1 to 2 hours after I have eaten it drops to around 6.5 to 7...so have read this and read that and tried this and tried that.. I average no more than 120 gm of carbs daily except on rare occasions when I have around 150..usually when grandkids come visit... So what the hell am I doing wrong? It been 6 months and am struggling.
Can anyone help?
Thank you
Bev (aka pollyanna)

Hi Bev, I would say you are not doing anything wrong and you do need to press your healthcare team for action. As we suggested back in October, if your insulin production is declining no amount of carb reduction will work to bring you normal levels. You have experienced a huge weight loss in a relatively short period of time. Type 1.5 is real, it is also known as LADA (Latent Autoimmune Diabetes in Adulthood), and many of the members here (including myself) fit this profile - unfortunately, many also received an inaccurate diagnosis of Type 2 and therefore inadequate treatment You need a second opinion. I would recommend contacting the Diabetes UK Helpline and hopefully they will be able to advise you on how you can get the level of care you clearly need. They can be contacted at:

https://www.diabetes.org.uk/how_we_help/helpline

There is a limit to what some people can achieve through dietary modification. Your healthcare team are in serious need of education Please let us know how you get on, or if we can help in any way.

 

[everydayupsanddowns]

As for the diabetes 'the NHS only recognises type 1 and type 2 and anyway the treatment for type 1.5 would be the same as type 2' (quote from specialist)

I don’t know who that specialist was, but from the conversations I’ve had with some globally respected diabetes clinicians, I’m afraid that is absolutely not the case. I saw a presentation at a conference when a Swedish study suggested 5 different types, where the speaker gently reminded the audience that there were already something upwards of 50 recognised subtypes of T2 alone.

And as far as I am aware LADA (which I assume is what was meant by T1.5) is identified as a form of Type 1 and should be treated as such - this from a Professor at Kings in London.

 

[everydayupsanddowns]

I don't want to lose any more weight.. 5 stone in 8 or 9 months without trying is enough lol

I know you’ve had a GAD test, but just wanting to check that your clinic are aware of your relatively moderate carb intake, alongside your rapid weight loss? Antibody testing is fraught with difficulties, and diagnoses are usually best made on a clinical basis rather than by relying on antibody scores alone. Have you had multiple antibodies checked? Or CPeptide measured? Those can throw extra light on more complex cases I think.

As for carbs-per-day - personally I don’t think you should drive down to particularly low levels if you would find that difficult and unsustainable. However, your current intake is quite similar to mine (150ish), which I consider to be moderate rather than low. So there might be a bit more wiggle room if you wanted to see what happened to your numbers at or just below 100g/day as long as you can make that work for you. You are still fairly early on in your diabetes journey, and it takes time to adjust.

 

[Docb]

Interesting take on things everydayupsanddowns. I sort of rationalised it as there being two types of diabetes; Type 1 and not type 1. If you are not obviously type 1 on the basis of symptoms then the treatment route is dictated by the nice guidelines which finish up on an insulin regime tailored to your particular circumstances if nothing else works. That's the place you would finish up anyway if you were one of the other labels for "not type 1". All my instincts say characterise fully and treat but my business head says why spend a lot of resource to get to where you would get to anyway. Is that a reasonable way of looking at things?

 

[Pollyanna]

Whew! OK... I am on pregabalin and because in December I went down with a severe case of shingles and it has left me with PHN. The amitriptyline is to relax stomach muscles which helps the hernia pain and to help me sleep.
And I sure know if I miss either of them.
I have always been a carb freak even as a child never sweet stuff and not junk food so it been hard and the problem is while I could eat a bowl of mash and cheese 3 or more times a day I just cannot face no or low carb meals. The weight loss has slowed down somewhat since being on metformin and eating a higher protein diet than I was but I don't want to lose more weight. I just want to get rid/heal/stop these damn hot sweats.. They are horrendous am constantly washing bedding, if I stand up during one I get faint.. It like a body alarm clock going off always at the same time.. If anyone else gets or has suffered these.. What helped?
I know it not the bedtime amitriptyline or bedtime pregabalin as have tested them.
Have taken a late night carb snack and a late night non carb snaxk etc in conjunction with altering times I take the metformin.
Re the type 1 comment etc.. I think she knows full well about the different types I think she was saying she had no choice as it the NHS that is restricting and I had been tested anyway...
For those of you that were being treated for type 2 but now 1 1/2 what is different?
My fasting bs this am is 10.5 if I eat a couple of slices of toast with butter and marmite and a chunk of cheese in 2 hours it will probably be 6 to 7ish and will only go up during the day if I don't eat lunch.
I have spent 6 months working at this.. There are days when I just get so low after a bad night that I think sod it and want to chuck all the pills in the bin 😡 lol

 

[Docb]

Glad that the gab and amy are doing something for you. Still suggest you take care if and when you come off them, the withdrawal symptoms, at least in my experience, are not to be welcomed.

My weight is stable on 80 g/carb a day at around 70kg, giving me a BMI of 25. I reckon my fighting weight would be about 65kg so would not be bothered at a kilo or two disappearing but I don't think that is going to happen unless I change something.

As for the night sweats, no idea, and I assume your GP has no idea either.

 

[Pollyanna]

I was 14 stone... But I was fit... At 5ft 8in
I walk.... I used to power walk... I used to climb mountains and scuba dive and work out 3 times a week... I now 9 stone have little energy struggle to walk dogs their 7 miles daily x 3 times a week etcetera... I obviously know I can't do what I did but... Before that first hospital rush in blah.. That said diabetes... Actually they asked how long you been a diabetic and i said I wasn't at breakfast... Yeah yeah naughty.. But when you lying on a trolly on oxygen in pain.. there is really only so many questions you can cope with... My GP who I trust totally is almost impossible to get to as everyone on register is trying to get appointments... I waiting until the latest bloods reach they takn last Thursday.. When I last mentioned it he thought maybe the pregabalin was the possible problem as pre menopausal women have increased hot sweats... But had full hysterectomy at 50.... He suggested the try suck it and see as in none at bedtime.. .no difference... He did say the metoformin could be increased so could take in the night?? Really.... Jeez am a diagnosed insomniac.. As in clinical diagnoses .. Since age 34...aint no way I going to set alarm to take a tab when I am eventually /actually asleep... I have to work part time I cannot without sleep
..

 

[Pollyanna]

So... I guess that was a bit of a ramble.. Sorry... Am frustrated. OK fasting level as I said this morning was 10. 6...had those 2 slices of toast with marmite and a huge chunk of cheese... Took dogs out about 3 miles then went to a client did maybe the equiv of around 4 miles... Came home had a cup of tea .. Ate roast lamb.....loads was hungry... mash, and roasted roots, peas, cabbage and cauli . Gravy and red current jelly.. Homemade no sugars .. Took metformin .. Waited only 1 hour...
BS 5.6
Thats the exercise . I know that.. As I said been working hard on this....
Just took again.. So 3 hours since I ate... 7.2 so it on the way up...
So I guess afternoon tea off yummy smoked salmon sarnies with cheese scones and brie and chips with mayo (joking)
But that's me and what's going on... Anyone having these hot sweats and on metformin... Let me know
Thanks all x

 

[HOBIE]

How much home grow veg did you eat ? Loads on this site if you look. 🙂

 

[Pollyanna]

Lots ...i have a very long garden 360ft..the last third is my allotment lol.. I grew more cabbage types and sprouting broccoli which will be ready soon...and have started the planting for this year and will be growing more legumes... I would like to grow kohlrabi and sweet potatoes.. New for me.. And this year there won't just be tomatoes in the green house... 🙂

 

[Sally W]

Whew! OK... I am on pregabalin and because in December I went down with a severe case of shingles and it has left me with PHN. The amitriptyline is to relax stomach muscles which helps the hernia pain and to help me sleep.
And I sure know if I miss either of them.
I have always been a carb freak even as a child never sweet stuff and not junk food so it been hard and the problem is while I could eat a bowl of mash and cheese 3 or more times a day I just cannot face no or low carb meals. The weight loss has slowed down somewhat since being on metformin and eating a higher protein diet than I was but I don't want to lose more weight. I just want to get rid/heal/stop these damn hot sweats.. They are horrendous am constantly washing bedding, if I stand up during one I get faint.. It like a body alarm clock going off always at the same time.. If anyone else gets or has suffered these.. What helped?
I know it not the bedtime amitriptyline or bedtime pregabalin as have tested them.
Have taken a late night carb snack and a late night non carb snaxk etc in conjunction with altering times I take the metformin.
Re the type 1 comment etc.. I think she knows full well about the different types I think she was saying she had no choice as it the NHS that is restricting and I had been tested anyway...
For those of you that were being treated for type 2 but now 1 1/2 what is different?
My fasting bs this am is 10.5 if I eat a couple of slices of toast with butter and marmite and a chunk of cheese in 2 hours it will probably be 6 to 7ish and will only go up during the day if I don't eat lunch.
I have spent 6 months working at this.. There are days when I just get so low after a bad night that I think sod it and want to chuck all the pills in the bin 😡 lol

I love veg & carbs too. Have you thought about making alternative meals to your usual carb heavy? I make pancakes, waffles & cakes using whisked eggs and egg whites instead of flour. Are they the same - no. But they’re an acceptable alternative. Last night I made pancakes filled with mushrooms, spinach and ricotta. Had chard on the side & delicious

 

[Pollyanna]

Thanks Sally.... That's great I will do the savoury pancakes.. Yum... Won't do cakes as I hate anything even slightly sweetened .. I make oat cakes to eat with cheese and rye flour flat breads to have with curries.
Pancakes for dinner then 🙂

 

[Pollyanna]

OK.. So.. 2 days of 80 or under carbs and have had the night from hell.. Went to bed 10 ish fell asleep immediately.. Woke at 12.30 to a soaking wet body and bed..with my assistant dog going wampy... Had obviously been trying to wake me from a deep sleep.. Sat up felt totally disorientated... Went into other bedroom.. Eventually fell asleep only to wake 2 hours later with another hot sweat but this time accompanied by hernia pain and IBS both of which I havnt had for weeks.. Tummy clearly not happy with food... Gave up trying to be in bed.. Watched a film while sipping ibs hydration fluids. .
Feel like c**p today... Tired fatigued in pain tearful won't be able drive walk dogs see clients and will only be able to eat porridge or semolina for next few days...
Sorry all but I really really cannot function on that low carb level and it seemed to make the night sweats worse anyway.. Have tried.. Maybe it just normal for me to have high fasting level lol... Or maybe it just the way I was raised with no breakfasts but large carbo suppers that my body became programmed to.. .
So... If anyone else had a liver that complained about no starch at bedtime.. Let me know how you re programmed it.
Thanks all 🙂

 

[Pollyanna]

Am struggling tonight... As in am really struggling... As in I am on some sort of melt down I never been before... Am not physically ill. . Well not really .. Am in... Going to swear if there is loads of stars am sure you can work it out... Am in **** it mode... Am normally a fighter .. had to be with our mother .. I just feel.. I just... I wasn't ill I wasn't feeling ill in this sense... I collapsed in pain... Get to hospital spend 6 hours still in pain and they all wetting their knickers doing how long you been diabetic... And now we all know the pain is a hernia due to a cesarean 40 years ago and a kind surgeon doing a hysterectomy 8 years ago who assumed every women was body conscious and followed the same cut line.... Can live with that.. Got my son... Got my grandkids ..
So... I wasn't diabetic blood sugar **** it ill... I was did do walk my dogs I see my clients and their dogs 2 days a week... I climbed mountains up to age 50 I did munroes up to age 60...
I have not barely functioned today...
Dogs not been a walk... Lovely spring day... Seen it out the windows .. Cancelled client... That equals no income...
Sorry am ranting
Just... I cannot do those low carbs... I need to sleep... In 5 nights have had 13 hours...
Help?

 

[Bronco Billy]

Hi Pollyanna. It sounds like things are tough for you at the moment. Perhaps you would like to call the DUK helpline https://www.diabetes.org.uk/how_we_help/helpline when it opens in the morning. Have a good sleep first, it sounds like you really need it.