Author Topic: Back Again  (Read 1641 times)

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Offline Pattidevans

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Re: Back Again
« Reply #15 on: 26 September 2016, 06:13:42 PM »
Excellent!  Actually to reassure people, I don't know, and can't access anyone's passwords.  All I can do is manually set it up to automartically send a message to the email given on the account enabling you to change your password.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Agincourt

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Re: Back Again
« Reply #16 on: 27 September 2016, 11:11:17 AM »
Hi Patti, my previous mail address has not been used for a long time and is now no longer valid [Agincourt] and I seem to be unable to alter my user name. So the best action is probably just to continue with TQ335. Unless you can alter that for me. The system won't let me.
Glicklazide, Lisinopril, Amlodipine, Lantus 14 u [currently]

Offline Pattidevans

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Re: Back Again
« Reply #17 on: 27 September 2016, 07:34:23 PM »
I have deleted your original account, allowing me to alter your username, but in order to do so it requires your current email so it can send you an email so you can verify the changes.  Can I assume your current email is the one I contacted you on and the one which you have entered as TQ?
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Agincourt

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Re: Back Again
« Reply #18 on: 28 September 2016, 11:00:07 AM »
Yes it is. That is the GMX one you used to mail me the other day.
Glicklazide, Lisinopril, Amlodipine, Lantus 14 u [currently]

Offline Pattidevans

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Re: Back Again
« Reply #19 on: 28 September 2016, 12:28:52 PM »
I have changed your user-name, you should now get an email at your registered email address and will have to change your password.  If that hasn't worked please let me know, and I will explain how to do it yourself   :)
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Agincourt

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Re: Back Again
« Reply #20 on: 28 September 2016, 03:20:28 PM »
All sorted now. Thank you.
Glicklazide, Lisinopril, Amlodipine, Lantus 14 u [currently]

Offline Pattidevans

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Re: Back Again
« Reply #21 on: 28 September 2016, 03:53:57 PM »
Excellent!  We can go back to talking diabetes again now  ;D ;D ;D
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Agincourt

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Re: Back Again
« Reply #22 on: 28 September 2016, 03:57:11 PM »
Been to see the diabetic team today and the news is both good and bad to be fair, but there is no resolution on the horizon for at least another month. So I am a little more than fed up. I decided to continue in this thread because all the other information is in here but from here on in I'll post elsewhere etc.

My local GP's team want me to go on Lantus at the minimal dose but I said no not yet, not until you have answered my questions fairly. They are now behaving like idiots! The consultant who was looking after me following my fainting episode stopped my Metformin based on that event. I got the test results from the hospital showing my Lactic Acid level in my blood stream at 0400 the following morning was 1.1 down from 4.4 at 2030 the night before. In other words it dropped to a normal level nearly eight hours after the last drink or eight hours to process 2 x 250 red wines. [1.1 is normal] Now given that on that day it was the hottest day in the year around here, the fact that I was dehydrated all day and had only a sandwich all day it is no surprise I took 2lts of saline and my Lactic Acid level remained high until I was re-hydrated. Everyone seems to ignore all to effects that a hot day has but it is slightly more than that. The medication I have been on since November last year has made me extremely susceptible low blood pressure issues. The reason they are medicating as such  - or their excuse - is that each of the medications acts upon a different part of the system. Well they do and that is a fact however the net result is a massive change in blood pressure by three different influences! Duh even a dodo can work out what will happen. The long and short of it was that my blood vessels have been chemically made larger, blood glucose extracted by the kidneys and blood thinned the overall intent was to bring my blood pressure down to what they perceive as my normal. Then along comes the hottest week and day of the year and guess what? Yup I cannot tolerate the sudden loss of pressure caused by natural thinning of the blood. Now everyone is covering their backsides.

Just told my Dr that I fainted due entirely to low blood pressure which was caused by inappropriate medication combined with a high temperature day and dehydration which is also encouraged by the medication. It all happened at the same time and nobody seems able to comprehend it.

Well been managing without Metformin quite well but not good enough so they are trying to get me onto Lantus. I am not prepared to go there until I am shown that I need to. So far nobody has made any effort to do that at all. So it looks like I have a fight on my hands. The first hurdle is to see the consultant who is covering his arse.
Glicklazide, Lisinopril, Amlodipine, Lantus 14 u [currently]

Offline Pattidevans

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Re: Back Again
« Reply #23 on: 29 September 2016, 09:20:25 AM »
I agree with you that it would seem very shortsighted of them not to put all the circumstances together to reach a conclusion rather than look at them individually.  Do you have the patient information leaflet out of the Canagliflozin packet and is the information about the conflict with Lisinopril and the possibility of fainting printed on it?  If so the Dr can hardly argue with that if you show it to him (preferably highlighted).  If you don't have it then usually the patient leaflets are available online and I am sure we can find it.


Most Drs will offer Byetta/Bydureon/Victoza before insulin.  However, what is is about insulin that bothers you so much?
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Agincourt

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Re: Back Again
« Reply #24 on: 29 September 2016, 12:21:40 PM »
Hi,

Quote
I agree with you that it would seem very shortsighted of them not to put all the circumstances together to reach a conclusion rather than look at them individually.

Short sighted is the understatement but even worse is the apparent failure to examine ALL the prospective problems. Hell's teeth! If I can do that why can they not do so?

Do you have the patient information leaflet out of the Canagliflozin packet and is the information about the conflict with Lisinopril and the possibility of fainting printed on it?  If so the Dr can hardly argue with that if you show it to him (preferably highlighted)

After reading your post on the subject, I examined everything in detail and came to a conclusion similar to you. However when I pointed this out to the Diabetic Nurse she didn't disagree [just as well for her] but stated that each one carried out its function by influence on different systems to achieve the desired results. That is one to act on the kidneys, one to act on the blood vessels and the other on ??? now not sure. I said I didn't accept that as a valid response since although they might act on different components of the body the net result was the same therefore any conflict or undesired effect of one would have a direct consequence on the others. I was told that the mixture of meds given was a common practice and I was not the only one.

Anyway I refused further treatment at the moment and was asked why. "Because I need to understand the circumstances more clearly since you are unable to" and left the surgery. I was later telephoned and asked if there was a problem by one of the administrators. I said there was but it was pointless discussing it. They insisted so I told them that there was a possibility of other medications instead of Metformin and I was not happy that I was being pushed towards Insulin simply as a cost consideration. It has to be noted that they have continually tried to get me on Insulin for many years and I am now begging to discover that they do not offer any other medications. I have asked around and the answers are not encouraging.

Quote
Most Drs will offer Byetta/Bydureon/Victoza before insulin.  However, what is is about insulin that bothers you so much?

Don't laugh.........don't you dare..........this is not the only reason but a long time ago and for no reason at all that I can understand, I see a needle go into me and I then keel over. It happens every time and you have no idea how embarrassing it is. So every time a needle comes near, I look away. It's been like this for many years now. However, the only concerns are the current and in my opinion mistaken circumstances, that have stopped them from giving me Metformin. To get back on the med which was very successful in my treatment I am having to jump through some major hoops.

The biggest issue at the moment is that the stupid medics [Consultant] are covering their arses because of the mistakes made on my admission. Mistakes: 1] failed to x-ray a damaged coccyx - this was a direct error of the non-English Dr in the Emergency Department. They X-Ray'd every other bloody part of my torso! 2] Failed to find the split gum and damaged denture [now fixed] 3] Failed to examine the correct ECG readout [my wife saw it left in the Ambulance!!]

Not once could I sit up because of the pain from my Coccyx and they all though I just had a bad back! I was examined by the Dr on admission but because there was no obvious bruising etc they dismissed it. So the long and short of it is that I have to have an ECG monitor fitted for three days so they can determine why my heart 'skipped a beat'. Hmmmmm When the Ambulance crew saw that they knew the machine was buggered because they told us so and did another one in the Ambulance. I told the Consultant this last week but he is not prepared to change his view. I also stated that on that day I was dehydrated because I had not had anything to drink which was a consequence/side effect of the medication I am on for Diabetes. That's why they dripped two litres into me then discovered I was OK to release with normal Lactic Acid levels in my blood. Duhhh!! Anyway he will not be persuaded otherwise so I asked what would be the consequence if I failed to attend for the test. I was told the file would remain open and any determinations relevant to the incident would therefore remain in limbo.

I cannot get an appointment sooner than three weeks from now so as a consequence cannot get back on my Metformin. I have asked if I can have another test to determine my circumstances but was refused because it is tantamount to insulting the Consultant......fer c~~~~~~~ sake! All I asked for was to go back onto Metformin for a week and then do a blood test. Simples - no Lactic Acid no problem.

So the bottom line is I now have to do this heart monitor thing in three weeks then they will close my file on that issue. I then go back to my GP and ask for Metformin again and when they say no they will have no reason to give for not putting me back on it because the previous file is closed and no longer valid. They will have to test my response to it because a refusal on the basis of the Consultant will not be valid when I am no longer under his care.

I was advised on a low dose of Lantus  - one stab a day. I am not happy with it simply because I do not see it as necessary at the moment, the need has not been proved adequately and until it is I am not prepared to make that choice. I will have to in the near future and I have had no doubts about that but I will not be pushed down a route just for the convenience of the Dr's practice or because other options have not been bothered with.

So there it is.......warts and all. the worst thing about all of this is it is now clear what has happened and more importantly why. If I can figure it out then why is it so damn difficult to get the medical bods to either agree or disagree instead of just dismissing it out of hand? The worst thing about all of this is simply that I now am loosing weight quite a lot [nearly 8lbs overall since the start] and I have nothing left to sit on!!! Except bone!!  :'( I might very well not last the three weeks or so and go for the Insulin before I see the Consultant. Not sure if I can keep the BG down for that long or before I look like them poor buggers out of a WWII prison camp.

Glicklazide, Lisinopril, Amlodipine, Lantus 14 u [currently]

Offline Quantum Learning

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Re: Back Again
« Reply #25 on: 29 September 2016, 01:40:12 PM »
Their response to you wanting oral D drugs and them refusing them is very strange IMO. Usually the NHS has got these guidelines they have to follow with Type 2's & they seem to stick to it rigidly where I live. On Dx you are told to lose weight & given Metformin, because they don't tell you to cut carbs this isn't usually enough to get your BG's down low enough so they then give you a sulfonylurea. After some time if your BG's are still too high as they probably will be cos you still haven't been told to cut the carbs they then give you all sorts of other drugs that are frankly dangerous. Only after these don't work will they offer insulin. All this can take several months/years. After reading about all these oral drugs here: http://www.phlaunt.com/diabetes/sp2index.php I made the decision I would ONLY accept insulin, bypassing all the usual guidelines. I only succeeded in this as my BG's were completely out of control in spite of eating very low carb (20-30g a day) I still get useless DSN's trying to get me to take the other drugs, last one spent nearly 90 minutes trying to convince me to take a 'Gliptin'.

As far as needles go, I've only been injecting since may but the needles are so small & fine they've not been a problem (other than the fact that I appear to be allergic to the insulin but that's a whole other story). Once they're on the end of the insulin pen, jab it in quick (doubt you'll feel it) and then you can't even see the needle. It's nothing like the needle on a syringe which is massive by comparison and going into a vein which is also scary to look at. Hope this helps if you do accept the insulin  :)
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9% Chol
Metformin SR 2000mg, Candesarten Cilexetil 4mg Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir.

Offline Agincourt

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Re: Back Again
« Reply #26 on: 29 September 2016, 04:11:22 PM »
Thank you for your response and information which I will digest and make a note off. I must agree with your points and now feel somewhat concerned as to why my GP's domain is as it is. Well to be honest I have been using them for over sixteen years now and aside from the odd replacement [the latest is a young female who will give everyone blood pressure problems!!] I have been 'seen' by most of the staff at one time or another. When I was first diagnosed it was very clear at the time that there was nobody in the practice that had any knowledge about it. In fact I knew more than they seemed to.

The 'Diabetic Nurse' a Sister whose total responsibility is looking after the diabetics has been seeing me since day one so you could say that we know each other pretty well. [16 years] I can tell you - and put money on it - that she will know nothing about the so called 'other' medications and options and so far as I can determine she prefers to deal with the common ones such as Metformin, Glicklazide and Insulin of one kind or another. I think I am going to have a battle to go the way I want but it can be done if I do it right and have some patience.

Regarding the Insulin issue, I was shown the equipment and it was demonstrated [not used] and I was given a couple of pamphlets on the matter, both of which were very clear. The pen she wants to give me was demonstrated and will require me to jab meself once a day and probably in the evening so my morning levels are reasonable [now at 8.0 to 9.0 depending on evening meal etc]. I would be on the minimum daily dose for a 24 hour period and maintain all me other meds [Glicklazide, Lisinopril, Amlodipine and Canagliflozin]. I asked what the response would be if my BG was as is and did not reduce as expected and was told the dose might be increased. I then said what if that dropped my BG too low say......during the day. Anyway I said that now was not the right time for this.

Well I have been a T2 since 2005 and have no other diabetic issues or problems because I have been able to keep reasonable control all this time. I have so far not been given a valid reason to change medications.  There is of course the possibility that I do need to stop Metformin but the validity of that has not yet been checked at all. I am going to see my Dr again about the issue to get a definitive answer before I go for me heart monitor fitting. However, I suspect I will get fobbed off.
Glicklazide, Lisinopril, Amlodipine, Lantus 14 u [currently]

Offline Pattidevans

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Re: Back Again
« Reply #27 on: 29 September 2016, 08:17:18 PM »
Whooo.. I am in the middle of downsizing from a very large house to a very small house and working hard most days to pack and also to discard possessions, some of which I am fond of but know I need to part with, some of which hubby is refusing to part with (his grandmother's antique books & a cabinet that I know won't fit), so I'm pretty much fully occupied right now.  So please forgive me for brevity.

1.  I have also had the experience of not being X-rayed after an accident where actually I broke a vertebra.  I could not walk upright as I left the hospital, I could only walk bent nearly double from the waist.  I returned to A&E a day later and they said "bruised ribs" and again refused to Xray me.  8 years down the line after I had considerable scoliosis of the spine did they Xray and discover the wedge fracture.  I took it to PALS (Patient Liaison service) and received an apology, not that it did much good (I have since had physio), but if you go to PALS you can lodge a complaint against the Consultant and it WILL be investigated.

2.  Byetta/Bydurian/Victoza are all injections, but Bydurian only requires injecting once a week.  Needles are indeed tiny.  Get your wife to do it and look away!

3.  Here is the (very reputable) website where I found the contra-indications for Canagliflozin https://www.drugs.com/cdi/canagliflozin.html
Any health care professional should know perfectly well that different drugs can interact with each other and have side effects.  Your nurse isn't being very sensible!

4.  Can you change surgeries?

5.  Do you still have any metformin?  If so would you take it without telling them and test accordingly to prove a point?
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Agincourt

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Re: Back Again
« Reply #28 on: 30 September 2016, 10:22:10 AM »
Quote
1. I took it to PALS (Patient Liaison service) and received an apology, not that it did much good (I have since had physio), but if you go to PALS you can lodge a complaint against the Consultant and it WILL be investigated.
[Snipped for brevity]

Thank you for that, I might just do so.

Quote
2.  Byetta/Bydurian/Victoza are all injections, but Bydurian only requires injecting once a week.  Needles are indeed tiny.  Get your wife to do it and look away!

I have had the pen/needle device shown to me in detail and I am reasonably sure I can do it without looking. It is indeed a finer needle than I have seen before and in all probability will be less painful than me currently stabbing my fingers!

Quote
3.  Here is the (very reputable) website where I found the contra-indications for Canagliflozin https://www.drugs.com/cdi/canagliflozin.html
Any health care professional should know perfectly well that different drugs can interact with each other and have side effects.  Your nurse isn't being very sensible!

After you first mentioned this I did the research you suggested so was well aware of what I consider to be dodgy. However she [Diabetic Nurse] specified quite clearly what system each drug acted upon but what she clearly couldn't [or wouldn't] acknowledge was the overall net effect.

Quote
4.  Can you change surgeries?

Well fortunately, there is another surgery less than a five minute walk away. I hadn't considered that option but now that you mention it I might make a few inquiries to that end. However, once they [the prospective new surgery] discover my move and why I have moved after all these years it might not work out for me very well. But now the thought is in my head I will look at the options.

Quote
5.  Do you still have any metformin?  If so would you take it without telling them and test accordingly to prove a point?

Yes I still have a months supply and have already thought about doing what you suggest. But, the circumstances are a bit more complicated because of issues concerning failure of the medical services. Any testing or evidence I show must be 100% bullet proof otherwise matters will just go downhill pretty fast. Doctors are pretty hard to deal with effectively so care has to be taken. I already have a plan to work to and when I have sufficient evidence to prove the many failures along the line I will go to my solicitor - another story about him but he is very good and has done very well on other issues for me in the past. So its gently ahead trying not to alert those in the firing line that I am ready to fight.

I am doing another two weeks of trying to manage my BG and testing 5 or 6 times a day before going further. I need to get this Heart Monitor thing done at the end of next month before going further because I need that test to prove beyond doubt that I was mistreated from the word go. If the results show that there is nothing wrong with my heart at all then that gives me a belt full of ammunition to accuse those responsible of a failure to treat a casualty correctly. That consultant made an incorrect diagnosis the heart results if clear will give me TWO cases of his failure to diagnose and assess correctly. He must already be aware because of the final series of blood tests before I was released from the hospital. It is on his recommendation that Metformin was stopped but he completely failed to diagnose why I was dehydrated or the direct consequences of that fact and is even now probably completely unaware that one of my medications cause dehydration and all this took place on the hottest day in over ten years. If the heart monitor readings come back clear then he is in the poo.

Once that issue is resolved then everything else can be dealt with easily.

The one thing I need to get hold of so that I don't have to go to the GP for [and warn them] is a blood test or similar for Lactic Acid. If I have that then I can prove one way or another whether Metformin has to be stopped.
Glicklazide, Lisinopril, Amlodipine, Lantus 14 u [currently]

Offline Pattidevans

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Re: Back Again
« Reply #29 on: 30 September 2016, 05:00:05 PM »
Hi Agincourt
Quote
After you first mentioned this I did the research you suggested so was well aware of what I consider to be dodgy. However she [Diabetic Nurse] specified quite clearly what system each drug acted upon but what she clearly couldn't [or wouldn't] acknowledge was the overall net effect.

She is ignorant, you need to print out that piece and show it to her.

Quote
Well fortunately, there is another surgery less than a five minute walk away. I hadn't considered that option but now that you mention it I might make a few inquiries to that end. However, once they [the prospective new surgery] discover my move and why I have moved after all these years it might not work out for me very well. But now the thought is in my head I will look at the options.
They are not told the reason for your move unless you yourself disclose them.  That aside, it should make no difference to their attitude to you even if they do know.  In the town where I live there are two good surgeries but I hear some dire stuff from friends who attend the others.  You can see reviews on the surgeries in your town here http://www.nhs.uk/Services/GP/ReviewsAndRatings/DefaultView.aspx?id=37154
In addition all Drs' surgeries are now subject to inspection by the Care Quality Commission and the results are published online here http://www.cqc.org.uk/
You can search their database.
Quote
The one thing I need to get hold of so that I don't have to go to the GP for [and warn them] is a blood test or similar for Lactic Acid. If I have that then I can prove one way or another whether Metformin has to be stopped.

Well of course since you have stopped Metformin it's a moot point, because they can say you have no Lactic Acid in your blood simply because you have stopped Metformin.  But you can get private blood tests done.  See http://labtestsonline.org.uk/



Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans