Hello and a little help please

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So pleased that you have finally got clinicians who have listened and are more switched on. The honeymoon period may well continue for a lot longer even if you start insulin now..... basically your pancreas will still be producing some insulin but just not enough even to cover a low carb diet and all the exercise you have been doing. When you start on insulin, it may even have a spell where it revives for a while once some of the strain is lifted off it, so sometimes you can start on insulin and then have to reduce it back down to little or nothing for a while, but eventually you start needing more again as more beta cells are killed off. We are all different and whatever happens you will slowly learn how to manage it with insulin

I am sure that you will start to feel better when you start using the insulin. Do you know which one or hopefully ones (plural... ie a basaland bolus regime) they are giving you?

Do let us know when you start using it and how you are managing and if you have any problems shout up.

So relieved for you.... Sending (((HUGS))) and CHEERS!! HOORAY!!
 
rebrascora said:
So pleased that you have finally got clinicians who have listened and are more switched on. The honeymoon period may well continue for a lot longer even if you start insulin now..... basically your pancreas will still be producing some insulin but just not enough even to cover a low carb diet and all the exercise you have been doing. When you start on insulin, it may even have a spell where it revives for a while once some of the strain is lifted off it, so sometimes you can start on insulin and then have to reduce it back down to little or nothing for a while, but eventually you start needing more again as more beta cells are killed off. We are all different and whatever happens you will slowly learn how to manage it with insulin

I am sure that you will start to feel better when you start using the insulin. Do you know which one or hopefully ones (plural... ie a basaland bolus regime) they are giving you?

Do let us know when you start using it and how you are managing and if you have any problems shout up.

So relieved for you.... Sending (((HUGS))) and CHEERS!! HOORAY!!
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I will do, they've called me back in for more bloods today so we shall see what they say next.

I shall definitely be on here more if I get more meds while I navigate how they work best.
 
So Hba1c has gone back up to 53 from 43 in 4 months. The DNS I saw last week called me earlier to say she still isn’t sure when to do with me so is writing to her endo (the chap who said he wasn’t interested in me for 2-3 years or unless I went into DKA) for his opinion so I’m not holding out any hope as to what help I’ll get and no idea how long it’ll take so more time of feeling this crap
 
Sorry to hear things still haven’t become clear for you @Titch2004 :(

Have you let the nurse and Dr know how difficult you are finding things, and how grim you have been feeling? :(
 
everydayupsanddowns said:
Sorry to hear things still haven’t become clear for you @Titch2004 :(

Have you let the nurse and Dr know how difficult you are finding things, and how grim you have been feeling? :(
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Thank you. So frustrating.

I made sure the DNS knew again today. I also made sure she was writing in the letter that I’m not fat, my weight is muscle mass and that I feel wretched.

She said that an Hba1c of 53 was within the acceptable nice range but I can’t imagine how people cope feeling like this long term! She said that because I’m fit I may be feeling more sensitive… read that as you wish.
 
Thanks for all your frustrations too. I've finally got my c peptide results back and they've dropped to 350. The cons said that if they were under 300 I would need insulin so the DNS is going back to him to suggest we start now and not wait for them to drop further. We shall se what they come back with...
 
Keeping fingers crossed for you. (((HUGS)))
 
Hi Lucy, don't know if my experience will shed any light, but I discovered that hormone changes can have a big effect on diabetes. I was diagnosed with prostate cancer and had radiotherapy and Prostap hormone injections. I immediately jumped into T2 diabetes. My Hba1c reading was 121 and they thought I had Pancreatic cancer. I had an MRI scan with contrast iodine and they said my lower body was free of cancer. My PSA had dropped to 0.01 so I made the decision to stop the hormone injections. Of course my Oncologist advised against this and advised me to go on Bicalutamide tablets. To cut a long story short my Hba1c is at 48 now and I feel I am improving. Wonder if they need to check your hormone levels.
Percy
 
PercyVear said:
Hi Lucy, don't know if my experience will shed any light, but I discovered that hormone changes can have a big effect on diabetes. I was diagnosed with prostate cancer and had radiotherapy and Prostap hormone injections. I immediately jumped into T2 diabetes. My Hba1c reading was 121 and they thought I had Pancreatic cancer. I had an MRI scan with contrast iodine and they said my lower body was free of cancer. My PSA had dropped to 0.01 so I made the decision to stop the hormone injections. Of course my Oncologist advised against this and advised me to go on Bicalutamide tablets. To cut a long story short my Hba1c is at 48 now and I feel I am improving. Wonder if they need to check your hormone levels.
Percy
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Hi Percy, my hormones are pretty stable. I do notice a difference with my blood sugars through my cycle at certain points but I don't think there is any hormonal imbalance as I've had a lot of testing there over the years and my TSH was tested last year.
 
Been referred to Prof Partha Ker at QA as my c peptide is getting very low. Finally feel like I'm getting somewhere. The relief is palpable! Interestingly my neighbour recommended him to me if I had gone privately so I'm please I won't be using my medical insurance to get to see this chap. As I'm not in DKA I have to wait for a semi urgent clinic appt but the DNS said it shouldn't be too long. Thank you so much for your support
 
Wow!! You will be having an appointment with the "main man" himself?? How lucky are you? Absolutely delighted for you because, if there is one person in the country who will be thorough and do what is best for you and your diabetes, it is certainly Partha Kar.
Please do let us know how you get on....
He is a hero here on the forum so we will all be very keen to read your updates!
 
rebrascora said:
Wow!! You will be having an appointment with the "main man" himself?? How lucky are you? Absolutely delighted for you because, if there is one person in the country who will be thorough and do what is best for you and your diabetes, it is certainly Partha Kar.
Please do let us know how you get on....
He is a hero here on the forum so we will all be very keen to read your updates!
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I can now say I have had my appt - got changed 3x but finally made it this morning.

So I saw Partha who was fantastic.

He said he cannot confirm a diagnosis of LADA or T2 until he has run all the tests (that I should have had 2 years ago - all antibodies, hba1c and c peptide) so went straight for bloods. Will call me when he has the results.

He thinks I'm being over medicated so we may try removing the tulicity and see if my blood sugars rise as I don't need to lose any weight. I had been told by the community team that my target range was 4-7 but he says that that is too narrow and I've been getting quite stressed and obsessed keeping it in that range. I was 83% in range but extending it to 4-10 has bought me to 96% in range which he was very impressed with. Need to cut myself some slack re my diet!

Going to continue self funding the Libre 2 while I try de-medicating.

Feel so much better informed. Quite a few head in hands moments when I explained what had happened with the community team...
 
So pleased to hear this and that blood tests have been taken to check for LADA and that Trulicity has been ditched. I feel so much happier knowing you are in safe hands now and I am sure you must feel really relieved and reassured too. Cutting yourself some slack is very important, so really good that you have increased your range. It is one of the things I love about Libre, that it makes targets more achievable and remember not only is no one expecting you to get 100% in target but they may well tell you off if you do because long term, that is unsustainable and you risk burning yourself out, which is far worse than a TIR below 70%.

Do be aware that if you are Type1/LADA you are not doing yourself any favours by trying too hard with your diet to keep your BG in range, so if your levels go up and you are already following a low carb way of eating, don't feel that you need to pare your diet back even further. It just means that your body now needs insulin. Eating lower and lower carb to try to keep levels decent is often what causes people to not be correctly diagnosed, or delays the correct diagnosis. In some respects eating a balanced diet and letting those numbers go up is more likely to get you the correct treatment.

Anyway, just delighted that you are now in a safe pair of hands and things are being investigated properly.
Let us know how you get on when results are back.
 
Well its taken a while... finally got my LADA diagnosis 3 weeks ago. Having been dismissed in Feb as my results were -ve QA sent my bloods off to Exeter for review in July and I came back as very positive to IA2 and ZNT8 but negligible to GADA which is what skewed the diagnosis. I have since gone back to see Prof and I have been taken off Dapag as it was causing loads of fungal issues but had my Trulicity doubled, he wants to see if it makes a difference over the next 2 months before starting me on insulin but I am having pretty nasty side effects such as D&V, headaches and fatigue but the heartburn is the worst of them all. My Hba1c has gone up again and I am now riding around 9-12 most of the time even on a low carb diet trulicity and metformin. Not sure I can wait till January to be seen again to come off the Trulicity, really hopeful starting on insulin will help make me feel better. Also dealing with my 10yo son being diagnosed T1D 8 weeks ago through the ELSA study (we are a total success story there) so I have insulin int he house and the temptation to self administer is huge rn. Any advice for the heartburn would be very welcome.
 
I'm glad you finally got your diagnosis...type 1 has some genetic factors which would explain your son's diagnosis.
I'm not sure i'd take insulin off my own bat...well, i would now, cos i understand it, but not sure i could recommend it without any medical supervision.
No ideas re heartburn, sorry
 
The side effects you mention do seem to be common ones listed.
Are you taking anything to ease the heartburn if not then you could ask your pharmacist.
It maybe with your confirmed diagnosis that is not now the best medication so something to discuss with your GP.
 
Great to hear you have a confirmed diagnosis at last but sorry to hear your son has developed Type 1 in the mean time. At least you have some basic understanding of insulin to start with, so it won't be a total shock to the system for you and perhaps it will become a bonding factor once you start on insulin too. How is the little chap taking it? Hopefully in his stride at the moment. I think it can be a lot harder for parents.

I cannot for the life of me understand why Prof Kar would put you back on Trulicity when you have a confirmed LADA diagnosis and particularly in the current climate as most patients on it are unable to get their prescription fulfilled at the moment due to a shortage and especially on a doubled dose, when you had been off the Trulicity for a while. I think in your shoes, if it was making me feel that rough, I would be phoning his secretary or the clinic helpline if they have one and asking to be started on insulin or even if you can use some of your son's until your next appointment, especially as your levels are rising. We are approaching Christmas when you can guarantee that things will come to a head in the middle of the Bank Holidays.
As regards heartburn, I tend to use Gaviscon, but I really don't see that this medication is benefitting you even without considering the side effects and if you were moved onto insulin then some other Type 2 might be able to get your supply of Trulicity. We have numerous posts here on the forum of people who were finding it beneficial, but no longer being able to get it. I definitely would not suffer in silence. 2 months is too long when medication is making you ill and especially at this time of year, when you really don't need any extra stress.
 
Titch2004 said:
Well its taken a while... finally got my LADA diagnosis 3 weeks ago. Having been dismissed in Feb as my results were -ve QA sent my bloods off to Exeter for review in July and I came back as very positive to IA2 and ZNT8 but negligible to GADA which is what skewed the diagnosis. I have since gone back to see Prof and I have been taken off Dapag as it was causing loads of fungal issues but had my Trulicity doubled, he wants to see if it makes a difference over the next 2 months before starting me on insulin but I am having pretty nasty side effects such as D&V, headaches and fatigue but the heartburn is the worst of them all. My Hba1c has gone up again and I am now riding around 9-12 most of the time even on a low carb diet trulicity and metformin. Not sure I can wait till January to be seen again to come off the Trulicity, really hopeful starting on insulin will help make me feel better. Also dealing with my 10yo son being diagnosed T1D 8 weeks ago through the ELSA study (we are a total success story there) so I have insulin int he house and the temptation to self administer is huge rn. Any advice for the heartburn would be very welcome.
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Thanks for the update @Titch2004

Do try to get a message to your clinic to let them know how poorly you are feeling and to stress your keenness to start insulin.

Perhaps they think they are being kind by ‘allowing’ you to wait??
 
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