Nearly newly diagnosed

ajbod

Well-Known Member
Messages
748
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Hi everyone, I apologise in advance for what will be a long winded post. But i feel it may help if you understand my recent medical history.

4 o r 5 years ago i was diagnosed with Peripheral Neuropathy ( nerve damage in my legs ). Very unpleasant when it played up, some days i could only walk 100m before the muscles were cramped up and screaming at me. At that time i was told i was pre- diabetic. I looked about at diets and unfortunately i don’t like any of the foods you see in regular diets. But luckily i came across Keto, and straight away thought yea i can struggle through on butter, cream, cheese, bacon eggs and the like.

I lost 4 stone in 3 months dropping to 13.5 stone, i gradually increased my carbs trying to get to a stable situation ie not losing just maintaining. This was fine until June 2018 when i had my first stroke (lower right cerebellum) i just kept falling to the right. No other major symptoms I was very lucky! As a result of hospital food and going on holiday a week after leaving hospital i was eating a “regular” diet. I put weight on but not too much.

October 2019 i had a terrible gut ache, my doctor told me it was an extension of the nerve damage, he didn’t even physically examine me, “just take pain killers”. 2 days later i was blue lighted into hospital with an infected inflamed bowel , large dose of paracetemol and morphine just to get there. That was a 4 day stay.

The Gastrology doctors pulled some very stunned faces when i told them what the GP had said. I was eventually diagnosed with Diverticular disease. A week later my GP wanted blood tests doing, These showed raised inflammatory markers which i politely pointed out was probably the infection he missed that put me in hospital for 4 days. The tests were repeated and i was told “YOUR DIABETIC” Level of 48 “THAT’S IT THERES NO GOING BACK”. An appointment was made with the diabetic nurse for December 19th, which i missed, they were very arsey about it, but i thought my excuse of my second stroke that very morning was a good enough reason. (lower left cerebellum), this time falling to the left and my left eye was 3° out, up and out, this makes you incredibly sick. Christmas 2019 spent in hospital 8 days this time as they required an MRA scan as 2 identical strokes with no known reason. As a result of no Thromboliser treatment that took 3 months to recover from. Eventually saw the Diabetic nurse in late February 2020, then before anything else was done along came Covid 19. I was basically ignored by the surgery until early 2021 decided to do follow up tests, at last result 49. I then had very painful legs, couldn’t sleep or walk it was agony. The doctor i spoke to on the phone couldn’t diagnose on the phone, and called me into the surgery, He looks younger than Dougie Howser. But I’m impressed, I’ve had 2 US Doppler tests, blood tests MRA scan on my legs. Outcome I have Peripheral Artery Disease, probably for the 4 -5 years i thought i had nerve damage. Waiting for further vascular surgeon appointments.

As i have a borderline diabetic test he prescribed 1 x 500mg Metformin, not for the diabetes but he thought it would help with my legs, which it did. Normal release caused gas which with diverticular is not good at all, so switched to slow release. My next appointment with the diabetic nurse was a total fiasco it was moved without telling me or her, so i was seen by another DN, she insisted i had to increase my metformin over 3 weeks to 2000mg a day, i couldn’t understand why but she was adamant. I increased to 1000 reluctantly.

Today on a beach in Cornwall i get a pre arranged call from my DN, Cannot understand why i was told to increase, and told me to go back to 1 tablet a day.

So to end it all my name is Alun, i’m 58 years old 13st exactly, Bmi 26.

Hopefully if they sort my legs out i’ll be able to walk more something i’ve not been able to for some time.
 
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TooSweetForMe

Well-Known Member
Messages
285
Type of diabetes
Type 2
Treatment type
Insulin
Welcome to the forums - and I'm so glad you are still alive and coming here for help and understanding.
 

VashtiB

Moderator
Staff Member
Messages
2,283
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
Hello and welcome,

It sounds like you've been through a lot. I hope they manage to sort out your legs.

Great work finding keto and succeeding on your own.
 

ajbod

Well-Known Member
Messages
748
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Thanks, I found keto purely because "normal" dietary food is awful as far as i'm concerned.
At least salad with lashings of mayonnaise is nice especially with a big juicy steak.
My go to snack is often very well done chicken thighs with crispy skin dripping with fat, who would think such delights were actually better for you than the so called healthy stuff. Unfortunately my major failing is having smoked for over 40 years i find it impossible to give up, but it has got to happen so i must struggle on at it.
I'm lucky that as of this moment the diabetes isn't really a problem, and hopefully my next test will put me back in the pre-diabetes range.
 

muzza3

Well-Known Member
Messages
1,789
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Cauliflower pretending to be rice and any vegetable pretending to be pasta
Hi and Welcome Alun

Seems like you have a rough time these last years. Congratulations on the weight loss and diet that seems to be keeping your sugar levels in control. Glad to see you back to the lower dose of Metformin and it is probably as much for the circulation as diabetes. Don't hesitate to ask any questions and let us know how you are going
 

TriciaWs

Well-Known Member
Messages
1,727
Type of diabetes
Type 2
Treatment type
Other
Hi

I developed non-diabetic peripheral neuropathy a few years ago, my GP kept testing me for diabetes but that was fine then - turned out the thing they didn't test for (two different surgeries over a few years) was my folic acid levels. I was finally referred to a neurologist who ordered the right blood test plus the nerve conduction. I now take folic acid on prescription and get my folic acid and B12 levels checked every year.
Then 3 years ago I was diagnosed as T2. I went low carb but eat plenty of green veg and green salad to avoid further nerve damage.
My GP agreed to hold off on metformin and statins to see if I could control diabetes by low carb, and the results convinced my nurse it worked after a few months. But most GPs and nurses haven't read the recent research and the govt official line didn't support low carb for years, and now only reluctantly as a possible option.
I had raised triglycerides 3 years ago and my overall cholesterol was ok but the LDL/HDL could have been better. In spite of some GPs at my surgery still insisting I'm on a high fat diet and firmly believing it will cause damage my blood fats improved too.
 

TooSweetForMe

Well-Known Member
Messages
285
Type of diabetes
Type 2
Treatment type
Insulin
Do you have to have a prescription to take folic acid, or can it be purchased over-the-counter?
 

ajbod

Well-Known Member
Messages
748
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I don't know my levels of anything really. No proper nerve damage tests were done as at the time as full inquiry would take 18 months and cost £90,026. I thought how tight to charge 90k and insist on the odd £26.
I've been on 80mg statins ever since my first stroke, also 75mg platelet inhibitors to reduce clotting, although it now appears my platelet count is way out of whack and showing inflammatory markers permanently, meaning a reduced number of red blood cells which obviously doesn't help with the PAD. I look ok from the outside though my wife might disagree, but inside i seem to be a complete wreck.
 

ajbod

Well-Known Member
Messages
748
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Latest news, results of MRA scans found popliteal aneurysms behind both knees, plus a blockage in the left leg.
Just seen the vascular consultant and being operated on next Tuesday, although the aneurysms aren't large enough to trigger automatic surgery, he doesn't like the look of my left leg. The colour is not a good as the right. expected 4 - 7 days in hospital, might be rather a long fast, as i don't expect much help with the keto. The ironic thing is my legs are so much better now than they've been for 3 -4 years when GPs were not interested. also told very lucky as popliteal blockage usually means loss of limb, somehow mine has kept on working on very restricted blood supply.
we've been on holiday down in Cornwall, 2 weeks eating low carb with the odd treat, can't beat Callestick farm ice cream.
twice had fish and chips, the first i was fine with, the second, the night before driving home had more chips. legs played up during the night so only had 3 hours sleep. felt sick in the morning, couldn't eat breakfast and had a double vision episode driving home. Pulled over into a lay by had a quick drink and was fine, very odd may be more to do with the lack of sleep. or the earache in my left ear from my father in law. He's been very under the weather for about a month, headaches, shoulder ache, couldn't eat jaws ached. sporadic loss of vision for a second or so hence not driving. Ended up the first 5 days spent calling an ambulance for him sleeping 19 hours out of every 24. Then a tour of 3 different hospitals with him making sure the doctors knew the truth, not the "well it's not that bad" BS, and keeping the waffle to a minimum. why use 10 words when 300 will do!
Turns out he has GCA put on 17 tablets a day 12 of which are steroids. he can hardly swallow an aspirin so to watch him take all those is comical, but within 24 hours it's knocked 10 years off him. Hence the constant jabber driving home, i don't know of anyone who can compete with him where talking is concerned. Now he's like a hyper active kid and eating them out of house and home.
 

Antje77

Oracle
Retired Moderator
Messages
19,284
Type of diabetes
LADA
Treatment type
Insulin
Wishing you the best of luck for your operation next tuesday, hopefully the legs will improve by a lot!
Also good wishes for your father in law and your poor ear ;)

meaning a reduced number of red blood cells
Are you aware issues with red blood cells can alter hba1c results?
After your current and more pressing issues, you might want to ask for a fructosamine test instead of an hba1c.

Please keep us updated!
 

ajbod

Well-Known Member
Messages
748
Type of diabetes
Type 2
Treatment type
Tablets (oral)
How can they affect hba1c tests, do they read lower or higher than actual level. My last test was about 3 months ago and was 49 so just tipped over into diabetes. I still don't know if the Thrombocytosis is all the time, or a reaction to an intection i knew nothing about.
 

Antje77

Oracle
Retired Moderator
Messages
19,284
Type of diabetes
LADA
Treatment type
Insulin
How can they affect hba1c tests, do they read lower or higher than actual level.
I'm not sure.
I don't like referring people to Google because there's a lot of inaccurate information out there. But you might find more information when searching for aneamia and hba1c for instance.
You could also start a thread with 'low red blood cell count and hba1c' in the title. This will likely get replies from members who know more about it than I do.

But I think your focus for now is mainly the operation on your legs!
 

ajbod

Well-Known Member
Messages
748
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Sat here at home, i think kicked out of hospital too soon. Massive cut from groin to the centre of the calf. I was under the impression it was more of a keyhole job but no. 5 hours in surgery!
Had 3 meals in 4 days nothing really suitable but various nurses etc did try and took an interest in Keto. Living on pain killers it's so sore massively swollen, but a good strong pulse so worth it. they've changed my meds from clopidogrel to rivaroxaban and aspirin to thin rather than alter the clotting factor. the consultant thinks this will postpone the right leg surgery for several years.
Unfortunately moving around at the moment is very painful, if i sit down my leg seizes up and i cannot straighten it, so standing and walking is nigh on impossible. Every single person on the vascular wards were diabetic! At least my bg tests were all 5.2 5.3 with a max of 6.1. They also did masses of other blood tests including 3 hba1c tests but i don't know the results of them.
 

ajbod

Well-Known Member
Messages
748
Type of diabetes
Type 2
Treatment type
Tablets (oral)
My leg is much improved now but still some pain and swelling if stood or sat upright for too long.
Dressing changed as falling off, i think too much pressure from swelling. 2 short sections not healing as well
as rest, hope this improves soon, need to get back to work self employed so nothing coming in.
Just had a telephone call with DN hoping to get a meter and strips out of them as i can't really afford to self
fund. Shot down straight away as hba1c result back from last week 36. Great news but my version of keto she said
herself is unsustainable, i knew that and need to increase carbs, but without testing i won't know what carbs or
quantities work for me. Just stonewalled no insulin no meter.
Had 2 instances last week, first one leg aching so much after cooking bacon said stuff it and had a bacon sandwich.
Comatose in chair for an hour? surely 36g of carbs shouldn't do that. next day had 1 slice fried with bacon and egg,
comatose for 3 hours? Not happened since but thought perhaps BG high in the morning but cannot tell with no test
available, DN couldn't care less said impossible!. I'm seriously thinking now as far as my legs are concerned i'll see them
but stuff the diabetes advice i'm better on my own.
 

ajbod

Well-Known Member
Messages
748
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Latest news leg still improving nowhere near as swollen. Still one problem patch, but the groin is a tricky place. Can't be left open due to rubbing etc. Finally in a position to test bloods thanks to mother in law, (spare meter ) self funded strips etc.
Also father in law sadly died on the 29th August. went downhill very rapidly. It turned out he had pulmonary fibrosis ( farmers lung ) he was a bank manager but obviously did farm walks etc especially as he preferred rural banks. Ironically the steroids that saved his life from the GCA suppressed his immune system so that a chest infection turned to pneumonia and rapidly overcame his system, stealing the remaining lung capacity he had.