[Diabetes] General Chat and Support Thread

Royal Legend · 12-10-2019 12:45pm

banie01 wrote: »

Just thought I'd revisit this post with an update on how my Diabetes journey is going.

I am still insulin free, I have a HbA1c due next week and my 1st Endo appointment since completing my run at the Newcastle diet.
My BG levels are still great IMO, and my 7, 14, 30 and 90day numbers would seem to bare that out too.
I'm really looking forward to getting the actual HbA1c and getting a comparison of the numbers after 6 months without Insulin.

I've returned to a normal diet, all things in moderation.
I would say however that my actual appetite has reduced greatly since finishing the Diet.

Over the course of the diet I dropped a total of 16kg, and it's stayed off.
Went as low as 94kg and am @95kg at the moment.

My Diabetes is better than it has been at any point since diagnosis.
The diet itself was very hard slog, but I'd hope my outcome does demonstrate that when it comes to T2, T1.5 and LADA that a little determination can make huge differences.

Well done Banie

P.S I am lost on the figures HbA1C etc

My last bloods through my doctor for fasting in June was 7.3 mmol/L

Now that i started the trial in Cork i have had my HbA1c has been taken three times. i asked for the results for the first two.

What got me on the trial was a HbA1c of 53 mmol/mol which they say = 8.6%? (I was told at the time that I just got into the trial on 7 which to me meant i was down 0.3 on my June result

Also my second HbA1c on the trial was 49 mmol/mol which i was told was 8%?

so what is the 7.3 mmol from June and how does that relate to the 49 mmol from the last test?

The reason I ask is that you also had a reading of 49 mmol which you said was 6.6 in old money

so is 49 mmol 6.6 (down for me from 7.3 and 7.0) and what is the 8%

Totally confused

CramCycle · 12-10-2019 12:53pm

Anyone else wondering if BlackEdelweiss is OK?

Buford T. Justice XIX · 12-10-2019 12:55pm

CramCycle wrote: »

Anyone else wondering if BlackEdelweiss is OK?

They were online this morning so hopefully they have recovered well.

echo beach · 12-10-2019 1:39pm

Royal Legend wrote: »

Well done Banie

P.S I am lost on the figures HbA1C etc

Totally confused

You are not alone. Think of it as being like getting a distance in miles or kilometers or a temperature in Fahrenheit or Celsius. It is still the same distance or temperature but different figures.

There are plenty of online conversion tables so you can see how the figures relate to each other. https://www.diabetes.co.uk/hba1c-units-converter.html

Royal Legend · 12-10-2019 2:38pm

echo beach wrote: »

You are not alone. Think of it as being like getting a distance in miles or kilometers or a temperature in Fahrenheit or Celsius. It is still the same distance or temperature but different figures.

There are plenty of online conversion tables so you can see how the figures relate to each other. https://www.diabetes.co.uk/hba1c-units-converter.html

Still none the wiser?

So is the 7.3 from June an DCCT figure? so at 8% on the new figure that would be 6.6??? or have i gone from 7.3 to 8????

Completely confused

Then what are the bands in relation to pre-diabetic? as far as I know it is under 5.8, but what is this figure DCCT or a %???

The conversion does not solve my question

banie01 · 12-10-2019 2:44pm

Royal Legend wrote: »

Still none the wiser?

So is the 7.3 from June an DCCT figure? so at 8% on the new figure that would be 6.6??? or have i gone from 7.3 to 8????

Completely confused

Then what are the bands in relation to pre-diabetic?

There are are range of figures available.
The current standard is mmol's which is what most reporting is in nowadays.
If you were diagnosed more than @8yrs ago tho, the older system in use was Mol and it's stuck for some of us longer term patients.
Even amongst GPs and nurses there is still quite a bit of to and fro on mmol >Mol.

The names now are DCCT, IFFC and %.
Diabetes UK explain it better than I can here https://www.diabetes.co.uk/hba1c-units-converter.html

Galbin · 12-10-2019 3:22pm

Does anyone know if there is anywhere in Ireland I could get a fasting insulin test done? Had one done years and years ago in England, but with my recent situation would like to get one again. I am happy to pay for it. My GP is fantastic and will order different tests, but the hospital lab rejects anything out of the ordinary.

Martina1991 · 12-10-2019 4:12pm

Galbin wrote:

Does anyone know if there is anywhere in Ireland I could get a fasting insulin test done? Had one done years and years ago in England, but with my recent situation would like to get one again. I am happy to pay for it. My GP is fantastic and will order different tests, but the hospital lab rejects anything out of the ordinary.

I don't know where you're getting this information from. A hospital lab only rejects samples that aren't appropriate for analysis (wrong blood tube, haemolysed, insufficient etc).

Some tests require the sample to be sent to the lab on ice to preserve the sample and insulin is one of those tests.

If your doctor thinks requesting a fasting insulin test is beneficial or appropriate for you then they will do it.

BlackEdelweiss · 12-10-2019 4:56pm

BlackEdelweiss wrote: »

Im looking for a bit of quick advice. I came home from work sick at 5.15. My blood had been rising all day even with insulin. Have a really sick stomach and strange feeling in my head. Just done a keytone test and I am reading 5.1. I have never had more than 0.2 before. What is the best course of action here?

Quick Update:
I ended up going to A&E at about 10pm Friday night after a bit of a mixup with my new Keytones meter. I thought I only had keytones strips but they had given me a box of blood strips aswell, very similar box and slightly different colour box. I thought I had a keytone reading of 17.7 so headed straight to the hospital. The error was picked up pretty quickly once there but they were still pretty concerned about a 5.3 keytone level.

Unfortunately there were no diabetic nurses or consultants in A&E in the middle of the night so I was kind of left to see what developed as I was not in DKA at that time. Spent a horrible night in a corridor, feeling very nauseous and generally crap from such elevated blood sugars. Got tested again at about 5am and I had gone into DKA at this stage so I got a bed an started receiving treatment then. Spend the day in A&E hooked up to a few machines, not able to get out of the bed. The diabetic consultant and nurse were great and gave me some good advice for if a similar situation happened again. It was nothing I hadn't heard before, the only difference this time was that I actually listened.

My bed position in A&E provided me with a great view of everything that goes on in there during the day and night and I have to say I have a new sense of respect for the nurses in particular. The doctors swan around a bit but the nurses have to deal with everything from relatives pestering them, travellers thinking they own the place and have the right to do what they want, patients with mental, physical or drug/alcohol issues. All this on top of doing their job. They were on the go for the full 12 hour shift and always with a smile on their face.

The whole thing gave me a bit of a wake up call. I have had diabetes 10 years and never had an issue other than hypos. This showed me that I the downsides of diabetes are not just for everyone else, I am eligible just like the rest and it is up to me to try to avoid it as much as possible.

Thanks to all the nurses and doctors in A&E in UHG.

BlackEdelweiss · 12-10-2019 5:02pm

CramCycle wrote: »

Anyone else wondering if BlackEdelweiss is OK?

Thanks for your concern. I was online this morning after a good 12 hour sleep. Started writing my update post but had to go out for an hour and wanted to finish it before posting. Got busy then and only remembered about it now.

gctest50 · 12-10-2019 7:09pm

BlackEdelweiss wrote: »

...

Thanks to all the nurses and doctors in A&E in UHG.

Why ?

You needlessly went into DKA

While in a hospital

Sounds like they wanted to milk your health insurance

BlackEdelweiss wrote: »

..

Got tested again at about 5am and I had gone into DKA at this stage so I got a bed an started receiving treatment then.

BlackEdelweiss · 12-10-2019 9:41pm

They are not experts on diabetes, most gp's know little about it either. I agree I was left in the corridor a bit too long but the A&E was very busy, loads of sick people in there, probably loads of not too sick people there either.

I seriously doubt the doctor on duty that night was concerned about how much the hospital would get from my health insurance.

Anyway I'm not getting into a discussion about how good the medical staff or system is. I got good treatment and thank you to all the staff who took care of me.

Buford T. Justice XIX · 13-10-2019 8:53am

Not a recommendation by any means but there's some info for people looking at better management of diabetes through low carb diets.
https://twitter.com/EricaHauver/status/1182726016801882112?s=19

Galbin · 13-10-2019 11:49pm

Martina1991 wrote: »

I don't know where you're getting this information from. A hospital lab only rejects samples that aren't appropriate for analysis (wrong blood tube, haemolysed, insufficient etc).

Our local lab regularly decides that they won't do tests the doctor has ordered. This summer for example they refused to do two specific blood tests that the GP had ordered. And the craziest thing of all is that she had sent me to the lab beforehand for a special tube with a letter from her stating why I needed this test, and that they needed to supply me with that particular tube.

If she wants B12 tested (to name a specific example) she actually sends her patient to another hospital in the area, as they refuse to test it. Our local hospital has a terrible reputation, and this is one example of its policies.

Martina1991 · 14-10-2019 11:15am

Galbin wrote: »

Our local lab regularly decides that they won't do tests the doctor has ordered. This summer for example they refused to do two specific blood tests that the GP had ordered. And the craziest thing of all is that she had sent me to the lab beforehand for a special tube with a letter from her stating why I needed this test, and that they needed to supply me with that particular tube.

If she wants B12 tested (to name a specific example) she actually sends her patient to another hospital in the area, as they refuse to test it. Our local hospital has a terrible reputation, and this is one example of its policies.

No lab just 'decides' not to process a sample. There has to be a legitimate reason for rejection. Hospital labs provide a public service. The service users are the hospital doctors and GPs. The lab tries to accommodate all requests as long as the right sample is received. I think you should find out why your tests were rejected instead of blaming the lab.

As for the B12, many GPs send in blood samples for 'routine screening' and request a vast number of tests. These routine blood tests are often not clinically indicated i.e. the patient has no symptoms and therefore doesn't need the test. This includes Vitamin 12, Vitamin D, Thyroid function, Folic acid etc. If a hospital is rejecting these requests from GPs it is because the Dr. did not state on the request form that the patient has symptoms and needs the test.
It would save the HSE millions of euro a year if GPs only requested what was needed and didn't request unnecessary tests.

Galbin · 14-10-2019 10:45pm

Martina1991 wrote: »

No lab just 'decides' not to process a sample. There has to be a legitimate reason for rejection. Hospital labs provide a public service. The service users are the hospital doctors and GPs. The lab tries to accommodate all requests as long as the right sample is received. I think you should find out why your tests were rejected instead of blaming the lab.

As I already wrote, I was sent to the hospital lab with a letter from my GP explaining both my symptoms and the suspected disease. She requested a particular tube and they gave me said tube after reading the letter. I then took that tube to the practice nurse who drew the blood into that specific tube. A few weeks later (and after all those careful steps), my blood test results came back. They had not done the two tests (despite the letter and giving me the specific tube) and had written "test not routinely conducted."

So yes, this does happen in our locale. My GP was quite frustrated as she had specified the extreme nature of my symptoms and what I needed to be tested for. Also, I don't appreciate being scolded as if I were a child having some sort of strange tantrum. I wouldn't blame the lab without evidence.

Martina1991 wrote: »

As for the B12, many GPs send in blood samples for 'routine screening' and request a vast number of tests. These routine blood tests are often not clinically indicated i.e. the patient has no symptoms and therefore doesn't need the test. This includes Vitamin 12, Vitamin D, Thyroid function, Folic acid etc. If a hospital is rejecting these requests from GPs it is because the Dr. did not state on the request form that the patient has symptoms and needs the test.
It would save the HSE millions of euro a year if GPs only requested what was needed and didn't request unnecessary tests.

In my case, she had written a letter explaining my extreme symptoms and the suspected disease. Yet because the lab refused to run the tests it affected the outcome when I saw the consultant. I had been referred to him with the assumption that the blood test results would be ready, and thus aid in his diagnosis. He was not happy.

Also, if the HSE want to reject a test a doctor has ordered, there should be some sort of option for the patient to pay privately if they so desire.

Martina1991 · 14-10-2019 11:33pm

Galbin wrote:

She requested a particular tube and they gave me said tube after reading the letter. I then took that tube to the practice nurse who drew the blood into that specific tube. A few weeks later (and after all those careful steps), my blood test results came back. They had not done the two tests (despite the letter and giving me the specific tube) and had written [/b] "test not routinely conducted."

But why would you have been provided with the blood tube in the first place if the test wasn't available?

There are a vast number of tests that arent routinely available in every hospital. Those tests are then referred to a lab that can perform the test. That may be in Ireland, UK or further.

Full disclosure: i work in a hospital lab. We have to reject samples on a daily basis due to Dr or nurse's errors.
- samples unlabelled
- wrong tube type
- not received in the necessary time
- tests requested and didnt send the right tubes.
- samples labelled with the wrong patients information
(Imagine someone getting your blood results or you being treated based on someone elses results!)
- and much more

I assure you laboratory polices are in place to protect the patients, not the Drs.

I apologise if my tone was harsh. I certainly didn't mean to scold you.
It's frustrating working in a field behind the scenes where the blame can be placed and no one can question it.
I always wonder what the Dr had to say to the patient when they have to bring them back again to take more blood.
Honestly it probably is easier to say the lab rejected your sample instead of I f*cked up.

Galbin · 15-10-2019 10:22pm

Martina1991 wrote: »

But why would you have been provided with the blood tube in the first place if the test wasn't available?

This is a very good question. I have no idea why they gave me the tube if they were not willing to carry out the test.

Martina1991 wrote: »

There are a vast number of tests that arent routinely available in every hospital. Those tests are then referred to a lab that can perform the test. That may be in Ireland, UK or further.

Yes. Our local lab used to refer these on to the other labs you mentioned. However, they do this less often now. I imagine it's HSE cuts. I don't want to out my location, but trust me this hospital has a truly terrible reputation, and it does not surprise me that they have started rejecting the less common bloods rather than referring them on.

Martina1991 wrote: »

I apologise if my tone was harsh. I certainly didn't mean to scold you.
It's frustrating working in a field behind the scenes where the blame can be placed and no one can question it.
I always wonder what the Dr had to say to the patient when they have to bring them back again to take more blood.
Honestly it probably is easier to say the lab rejected your sample instead of I f*cked up.

Thanks for the apology, and I do appreciate your position. Honestly, I am sure your lab works properly, but our local hospital is wildly incompetent in many ways. And the reason I know they rejected it is because I got a copy of the bloods and it actually said "test not routinely available" for both of the necessary tests. Their incompetence is why my GP actually refers patients who can travel to get their bloods done in a hospital 20km away.

JP Liz V1 · 16-10-2019 2:37pm

My mam is looking for REVITIVE Circulation Booster, anyone use or a device similar?

She walks with her type 2 diabetes

gerrybbadd · 17-10-2019 12:25pm

Glad to hear BlackEdielweiss is ok.

Quick update on my situation with Xultophy. Rang the hospital and told them the story with the sickness etc. The nurse told me come off it straight away, and go back to Tresiba.

In the meantime, I had done a bit of reading on Xultophy. Apparently, treatment is to be started at 16 units, and built up from there.

Sligo told me to simply swap my 56 units of Tresiba, with 56 units of Xultophy. This is why i was feeling sick, puking etc. They were to ring me back last Friday, and this didn't happen, so i continued with Tresiba.

They finally ring me back on Monday, and say, we've had "an idea". We want you back on the Xultophy, but at 16 units to begin.... sounds like they might have just read the literature on it instead of just sending people out, not having a clue what they were doing. So not only that, they also want me to take 16units of Tresiba along with it, and go from there.

Getting rightly pissed off with feeling like a guinea pig in Sligo's care at this stage

banie01 · 17-10-2019 12:31pm

gerrybbadd wrote: »

In the meantime, I had done a bit of reading on Xultophy. Apparently, treatment is to be started at 16 units, and built up from there.

Sligo told me to simply swap my 56 units of Tresiba, with 56 units of Xultophy. This is why i was feeling sick, puking etc. They were to ring me back last Friday, and this didn't happen, so i continued with Tresiba.

Thats actually fúcking disgraceful Gerry!
All those SLGP injectibles need to be tritrated quite slowly as its not a case of "if" you get side effects.
Its a case of does your body react and adjust to the side effect by diminishing it as you adjust.

That anyone would prescribe a med withthose particular side effects and what are from my recollection quite clear prescribing and tritration guidelines is very worrying.

The med can work wonders in improving BG control but it does take careful introduction.
They are bloody muppets, straight onto 56 units!
You must have felt like you were walking a boat deck in a hurricane!

gerrybbadd · 17-10-2019 12:47pm

banie01 wrote: »

Thats actually fúcking disgraceful Gerry!
All those SLGP injectibles need to be tritrated quite slowly as its not a case of "if" you get side effects.
Its a case of does your body react and adjust to the side effect by diminishing it as you adjust.

That anyone would prescribe a med withthose particular side effects and what are from my recollection quite clear prescribing and tritration guidelines is very worrying.

The med can work wonders in improving BG control but it does take careful introduction.
They are bloody muppets, straight onto 56 units!
You must have felt like you were walking a boat deck in a hurricane!

Pretty much Banie! terrible nausea, constant wretching, dehydration etc, had a terrible few days after it. It took me a good couple of days to come back around even after stopping it.

banie01 · 17-10-2019 1:00pm

gerrybbadd wrote: »

Pretty much Banie! terrible nausea, constant wretching, dehydration etc, had a terrible few days after it. It took me a good couple of days to come back around even after stopping it.

I've been there with Victoza, but I was well signposted to all the issues by the team in Limerick.
So it was a gradual step up to the full dose over @12weeks and then I had 2 great years before it caused me any further issues.

Sorry to see your experience with Sligo wasn't as good.
Worrying that they are ignorant of the prescription guidelines and tritration need.

triona1 · 22-10-2019 11:32pm

Was it like when they prick your finger and you have to squeeze a certain amount into the tube?
Reread.

triona1 · 22-10-2019 11:42pm

If you're sent to an endo or a gp sends you to and endo arm up with a black or blue pen,my son is dx since aged 6 he's nearly 18 now my husband always took a pen with us and ticked every box for his yearly check up,tip for you all.

banie01 · 23-10-2019 4:35pm

Had my HbA1c result today and it's maintaining at 49

So thats 8 months insulin free and 2 HbA1c results at 49, I'm quite chuffed with the outcome.

Have had a podiatrist review today that tempers that great news with some not so good in that neuropathy has begun to set in.
Nothing major, but hot/cold sensation has been lost.

Endo was quite dismissive of the improvement made and complained that undertaking the NC diet whilst on Jardiance can cause DKA.
I told him that I'd discussed the effort at length with his Nursing team before starting and they'd said nothing about it at all to me.
Only advice was, monitor your BG and call us/them if I noticed an issue.

I'm glad I wasn't relying on my endo's appreciation or anything as a motivating factor in my pushing myself on the NC as it was a little deflating to have done everything right.
To drop 16kg, be insulin free and to have a further med dropped from my control regime (Goodbye Jardiance!!!) and get a meh but it could have been dangerous was a bit of a downer.
But I did this for me, and it's made a big difference.

CathyMoran · 24-10-2019 6:15pm

Am a Type 1 - HbA1c was 39, got results today.

Royal Legend · 24-10-2019 8:36pm

banie01 wrote: »

Had my HbA1c result today and it's maintaining at 49

So thats 8 months insulin free and 2 HbA1c results at 49, I'm quite chuffed with the outcome.

Have had a podiatrist review today that tempers that great news with some not so good in that neuropathy has begun to set in.
Nothing major, but hot/cold sensation has been lost.

Endo was quite dismissive of the improvement made and complained that undertaking the NC diet whilst on Jardiance can cause DKA.
I told him that I'd discussed the effort at length with his Nursing team before starting and they'd said nothing about it at all to me.
Only advice was, monitor your BG and call us/them if I noticed an issue.

I'm glad I wasn't relying on my endo's appreciation or anything as a motivating factor in my pushing myself on the NC as it was a little deflating to have done everything right.
To drop 16kg, be insulin free and to have a further med dropped from my control regime (Goodbye Jardiance!!!) and get a meh but it could have been dangerous was a bit of a downer.
But I did this for me, and it's made a big difference.

Nice one Banie

Keep it up now

triona1 · 24-10-2019 11:09pm

Well done banieðŸ‘

feedthegoat · 28-10-2019 3:31pm

Is there any way to get the Dexcom on Long term illness card?

[Diabetes] General Chat and Support Thread

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