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Confused New Member

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chrissiek

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To say I'm confused about diabetes is an understatement and it's a story going back over 20 years, so make a cup of tea or coffee and sit down.

I was diagnosed with MS in 1983 ish after having some weird things happening, falls and hand problems, oh and a weird case of double vision at the far left side. Oh I forgot temperature control, bikini in a blizzard type of thing and neuropathy plus dexterity problems getting worse over time. Add in IBS and a few other irritations too, so not the best.

I had 2 children in this time too, had to have a diabetes check with 1st in 1989 but nothing showed up major Spent most of 1990's looking after aging parents, kids and husband and struggling with the MS

Mother dies 2001, I had a breadkdown 2002 and havig a health check found out that I had a sugar level of 17, that only showed up in a urine test, the nurse had to go out to a heart attack case in the waiting room.

For the MS was on a raft of meds, plus painkillers, taking up to 30 tablets a day then they added in Metformin. From day 1 I was never feeling good, and yes it brought the levels down, but at times they went down to 2 and passing out. One tablet every other day. Also the MS did freefall, and I just got fed up of being a tablet dustbin.

i stopped taking met. and levels went back to 12-17 Tried it again as had a row with the diabetic nurse, down and bedbound.
Stopped and back to same level Doctor got involved, tried again and same thing happened bedbound I stopped all medication for all illnesses as I was of the opinion that they were all fighting each other.

Over the years I've been on and off Diabetic MEds, and when off stay at the 12-17 level.
All forms of metformin, glicazide and the worst of the lot Trulicity. That changed my personality and had cow pat syndrome.
I started that the day of lockdown March 23 2020 and yes it did help, but when you get to the stage of sh**ing yourself in the street I gave up.

Guess what my levels are back in the 12-17 level but I don'tcheck often now as I know when I feel well

Some of you may be saying oh what about diet control. Since October 2007 I've lost over 7 stone and the levels are still the same

Nobody seems to be listening to me, they all have this diabetes light bulb going off in their heads.

Because it's Type 2 I am under the auspices of the Community Diabetic Nurse, and they are god. Well I've told one to foxtrot oscar as she won't listen to me. You know I know best. My GP has written to the consultants but they will only see type 1, we thought we'd got round it but seems not.

Now I require an operation on my arm, I've got trapped nerves and they won't operate until my blood sugar level is down. Oh and a skin cancer op too.

I'm caught between a rock and a hard place, as no one is listening to my concerns. I'm wondering whether it's the MS causing it no one seems to understand.

sorry for the long intro.

C
 
You say that your BG didn't go down when you lost weight, but did you reduce carbohydrates, or just reduce calories?
All else being equal , it is rare for a Type 2 Diabetic not to reduce their BG when then reduce their intake of all carbohydrates - starches as well as sugars!
 
You certainly have had a hard time with all those health issues. I wonder in insulin has been suggested since all the other medications don't seem to work for you and just because you have been diagnosed as Type 2 it does not preclude insulin as a treatment.
 
Hello C and welcome to the forum.
MS as you know is autoimmune so have you been tested for type1 or slow onset 1.5? If this what you have then you need insulin.
 
You say that your BG didn't go down when you lost weight, but did you reduce carbohydrates, or just reduce calories?
All else being equal , it is rare for a Type 2 Diabetic not to reduce their BG when then reduce their intake of all carbohydrates - starches as well as sugars!
Believe me I have tried it all over the 20 years and am putting it politely getting effed off with it.

There are people in this world that live with a higher base blood sugar level quite healthily, and this continual trying to put us in a box that one size fits all is a total anathema to me.

One size does not fit all
 
Believe me I have tried it all over the 20 years and am putting it politely getting effed off with it.

There are people in this world that live with a higher base blood sugar level quite healthily, and this continual trying to put us in a box that one size fits all is a total anathema to me.

One size does not fit all
If they are saying they won't operate because your blood glucose is too high then it must be more than just a bit higher than even just into the diabetic zone which would be consistent with the levels you say of 12-17mmol/l.
Getting the correct diagnosis of diabetic type could make all the difference to your health.
 
You certainly have had a hard time with all those health issues. I wonder in insulin has been suggested since all the other medications don't seem to work for you and just because you have been diagnosed as Type 2 it does not preclude insulin as a treatment.
I'm a nosy person, I like to know the ins and out of a ducks wotsit.

The question that I want to know the answer from, and yes from the organgrinder and not the monkeys, why if I'm not taking medication it has stayed at the same level for 20 years. To me that is a red flag and I keep pointing it out but no-one will tell me.

If they take diabetes out of the equation what is happening in my body? And of course the person that knows my body best is me
 
If they are saying they won't operate because your blood glucose is too high then it must be more than just a bit higher than even just into the diabetic zone which would be consistent with the levels you say of 12-17mmol/l.
Getting the correct diagnosis of diabetic type could make all the difference to your health.
The level at the test was actually 10.8 2 weeks ago Surgeon wants 8.8

The non fasting test from a week before that when they were going via the back door method was 14.8
 
They would usually do a HbA1C rather than just a finger prick test as that can be very dependant on what you have eaten, you state of hydration, stress level etc.
 
They would usually do a HbA1C rather than just a finger prick test as that can be very dependant on what you have eaten, you state of hydration, stress level etc.
My guess would be that that 10.8 is a % HbA1c result and they will want under 8.8. I would guess the 14.8 non fasting test was a BG reading.... It really would help if the old units were completely dumped and HbA1c only reported in mmols/mol now but I guess old habits die hard particularly with older clinicians. I can't talk though as I still think in imperial with most measurements, even if I understand metric, I just don't think in metric and I am often too lazy to convert.
 
Hello C and welcome to the forum.
MS as you know is autoimmune so have you been tested for type1 or slow onset 1.5? If this what you have then you need insulin.
Thank you for the welcome.

I’ve just read your under note so you know about MS. Mine’s secondary progressive went through the stages.
 
Hi chrissiek, welcome to the forum.

What a frustrating position to be in to say the least. As you say, you know your body and if things don't feel right then it's worth pushing for a second opinion. I'd go as far as changing doctors (if safe to do so given your other health concerns) if that's what it took to be heard.

It's very strange that absolutely nothing has had an impact on your BS levels and would suggest that the classification is incorrect or potentially co-existing medications or health concerns could be hampering things.

You're welcome to give our helpline a call in case there's any other avenues to explore on 0345 123 2399.
 
Hi chrissiek, welcome to the forum.

What a frustrating position to be in to say the least. As you say, you know your body and if things don't feel right then it's worth pushing for a second opinion. I'd go as far as changing doctors (if safe to do so given your other health concerns) if that's what it took to be heard.

It's very strange that absolutely nothing has had an impact on your BS levels and would suggest that the classification is incorrect or potentially co-existing medications or health concerns could be hampering things.

You're welcome to give our helpline a call in case there's any other avenues to
The reason you need lower numbers is because high numbers mean you wont heal very well or end up with a massive infection.
I have just found this for you does it help? https://www.steadyhealth.com/articles/reasons-for-elevated-a1c-without-diabetes
I heal very quickly, never had a problem as I use natural remedies
 
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