# Hello and a little help please



## Titch2004 (May 5, 2021)

Hi,

My name is Lucy, I'm 35. I was diagnosed with T2 about a month ago after being on metformin for IR linked to PCOS since I was 19 and then I had GDM with all 3 of my pregnancies which needed ridiculous amounts of insulin to control. The Endo Dr told me after my 3rd baby that my pancreas would eventually burn out and it was only a matter of when not if.

Sadly it has given up it seems. I started developing infections I couldn't shake and after a particularly nasty boil that nearly needed surgery they took some blood and my Hba1c was 100. My diabetic nurse is less than helpful. My GP is convinced its LADA and wants me seen at the hospital but the hospital have come back today saying they're not interested as I had GDM and its obviously T2 so treat me that way until it doesn't work any more then they'll reassess. 

I'm generally fit and healthy. I train weights 4-5x a week and compete in powerlifting so I'm a bit heavier than the normal 5'2 woman as I have a lot of muscle. I eat very well to feed my muscles and I'm intolerant to potatoes and MSG so don't eat lots of fast food as it is. 

The Nurse Specialist has put me on Glic and Dapagliflozin as well as the Metformin I was already on. She started our introductory phone call by chastising me for getting fat and eating badly. I was conscious of not losing my temper as I have to have a relationship with this woman for the foreseeable future but gently stopped her and pointed out she should ask me what my diet and dress size are like before making assumptions about me. She also admitted she hadn't read my notes when I mentioned the volume of insulin I was using when I was pregnant with my boys.

My parent's bought me 6 weeks worth of Freestyle Libre2 sensors when the testing strips for the machine I was given are now on back order so I had no way of testing. 

I'm a little exasperated at the lack of care by both the nurse and the consultants but my GP is amazing and is fighting hard for me.

I was wondering if other people have had similar experiences and whether I should pay for private tests/go private ( as I have insurance)...?

Any suggestions would be greatly appreciated. Apologies for the essay. Lucy


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## Julie Robson (May 5, 2021)

Gosh! Sounds like your nurse needs a holiday or new career ... my husband who is the diabetic had a few run in’s with his diabetic nurse and he put in a complaint to the local health authority .... not seen her since. We understand she left on her own accord. 
I must admit if it was me I would be having a face to face conversation with especially as she admitted she hadn’t read the notes! 
as far as getting tested via private means - yes why not if you have the means and it’s not going to cost a small mortgage  then do it .... then you could share the results with your GP. ..... and at the end of the day give you peace of mind. Stay well and safe. Kind regards JR


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## Inka (May 5, 2021)

@Titch2004 Hi   I know women who were diagnosed with “GD” but were later found to have Type 1 (LADA is just another form of Type 1) so having GD wouldn’t rule out Type 1. Your PCOS does make Type 2 more likely, I believe, but I’m sure some women with PCOS also have Type 1.

So yes, if you can pay for the extra tests through insurance, I’d do that personally. For one thing, if you are Type 1, Gliclazide will squeeze the life out of your remaining beta cells much quicker. That’s not good.


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## rebrascora (May 5, 2021)

Hi Lucy and welcome. No need to apologize for giving us lots of information as it helps enormously to form a better picture of what is going on. 

So sorry to hear you are having such problems and the attitude of the nurse is sadly all too common judging by the experience of quite a few people joining the forum. Good to know that you have one health care professional batting for you though even if they are stuck between a rock and a hard place at the moment. Very disappointing that the consultant will not take your referral. Could you perhaps ask your GP to try a neighbouring diabetes clinic. Might not be as convenient as your local one but may offer an alternative way around the problem and I believe you can be referred to a diabetes clinic of your choice. I know they will all be stretched at the moment as Covid is having a significant impact on diabetes so you can kind of understand why they have bounced back what they perceive as a Type 2, but I think it is possible that you may be LADA from the circumstances you have outlined.

Libre is fantastic and many of us self funded until we got it on prescription. Not cheap but so useful for understanding what is going on. How are you finding it and what sort of levels are you getting at the moment? Has the gliclazide made any difference?
Are you keeping a food diary along with your readings so that you can show the nurse what is going on. I was assumed to be Type 2 when I was first diagnosed and I whittled my carbs down to the bare bones by cutting out all the carb rich stuff like bread and pasta and wholegrains. My breakfast porridge was the last thing to go and I did briefly manage to get down into single figures at that point but they started me on insulin the following week.

I hope you are able to get something sorted soon. Perhaps the Diabetes UK helpline above may be able to offer you some advice for how to proceed.


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## Titch2004 (May 5, 2021)

Inka said:


> @Titch2004 Hi   I know women who were diagnosed with “GD” but were later found to have Type 1 (LADA is just another form of Type 1) so having GD wouldn’t rule out Type 1. Your PCOS does make Type 2 more likely, I believe, but I’m sure some women with PCOS also have Type 1.
> 
> So yes, if you can pay for the extra tests through insurance, I’d do that personally. For one thing, if you are Type 1, Gliclazide will squeeze the life out of your remaining beta cells much quicker. That’s not good.


Thank you for your reply. This it what my GP is worried about. I'm having some unpleasant side effects with the meds as it is and when I train my sugars spike to 15 without any carbs (which I know is my glucagon being released to fuel the workout) but the GP is concerned this means I'm not producing anywhere near enough insulin even now a month into Glic. I'm drinking 5-7l of water a day as it is and even sitting here typing this my lips are tingling with thirst. 

It's such a minefield and I'm not sure where to start. I think I am going to pay for the bloods.


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## Inka (May 5, 2021)

How horrible for you @Titch2004 Yes, I’d definitely pay for the bloods. They do a C Peptide and Type 1 antibodies blood tests. Those tests will provide extra information that will help determine your type.

Do you have any Ketostix? They’re urine dipsticks to test for ketones. I don’t think they’re expensive so you could consider buying those to check for ketones. Ketones are associated with Type 1 and can be dangerous if you have a lot of them.


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## Inka (May 5, 2021)

Just checked - Ketostix are around £6 for a pot. Can I ask exactly how much insulin you were on in the third trimester?


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## Titch2004 (May 5, 2021)

rebrascora said:


> Hi Lucy and welcome. No need to apologize for giving us lots of information as it helps enormously to form a better picture of what is going on.
> 
> So sorry to hear you are having such problems and the attitude of the nurse is sadly all too common judging by the experience of quite a few people joining the forum. Good to know that you have one health care professional batting for you though even if they are stuck between a rock and a hard place at the moment. Very disappointing that the consultant will not take your referral. Could you perhaps ask your GP to try a neighbouring diabetes clinic. Might not be as convenient as your local one but may offer an alternative way around the problem and I believe you can be referred to a diabetes clinic of your choice. I know they will all be stretched at the moment as Covid is having a significant impact on diabetes so you can kind of understand why they have bounced back what they perceive as a Type 2, but I think it is possible that you may be LADA from the circumstances you have outlined.
> 
> ...


Guildford was my choice of referral as that is who cared for me when I was pregnant and I was really impressed with their Endo Centre. My local on is Portsmouth and I have been told to avoid that as Portsmouth has one of the busiest diabetic clinics in the country.

The libre is amazing and I find it so easy to use. My levels are around 7 at waking, I jump to 12ish with food and then sit around 7-9 for the rest of the day. I track my meals as it is for my training so I know carb volumes and have been carb counting since going on Met when I was 19. I don't eat bread or pasta as it it. I stick to Low GI carbs such as sweet potato or Quinoa. My middle son is peanut allergic so we don't eat much processed food and I've always cooked from scratch.

Thank you again. L


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## Titch2004 (May 5, 2021)

Inka said:


> Just checked - Ketostix are around £6 for a pot. Can I ask exactly how much insulin you were on in the third trimester?


Thanks, I'll order some now.

I actually looked in my old book last night and I was on 86 units of novorapid with each meal


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## Inka (May 5, 2021)

Were you also on background/basal insulin eg Levemir, Lantus, Tresiba, etc?


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## Titch2004 (May 5, 2021)

Inka said:


> Were you also on background/basal insulin eg Levemir, Lantus, Tresiba, etc?


Yes. I was on Levemir too. I think that was 25 in the morning and 30-40 at bedtime


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## Inka (May 5, 2021)

Ok, so those are large amounts of insulin but with your PCOS which causes insulin resistance, that might not be an unusual amount. As a comparison, I have Type 1, I do _not_ have PCOS and I’m quite sensitive to insulin. But pregnancy itself caused a lot of IR and my doses basically quadrupled. One lady in my clinic had to increase her insulin even more than that and she was Type 1. So with pregnancy and IR from PCOS too, it is still a possibility you have Type 1/LADA, I’d think.

With your PCOS added to the mix, I do think you need extra tests to determine your type because it’s hard to separate out what’s what. The extra tests, your weight and history, etc, should allow a specialist to diagnose your type. Keep records of your meals and blood test results as they’ll be helpful too.


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## Titch2004 (May 5, 2021)

Inka said:


> Ok, so those are large amounts of insulin but with your PCOS which causes insulin resistance, that might not be an unusual amount. As a comparison, I have Type 1, I do _not_ have PCOS and I’m quite sensitive to insulin. But pregnancy itself caused a lot of IR and my doses basically quadrupled. One lady in my clinic had to increase her insulin even more than that and she was Type 1. So with pregnancy and IR from PCOS too, it is still a possibility you have Type 1/LADA, I’d think.
> 
> With your PCOS added to the mix, I do think you need extra tests to determine your type because it’s hard to separate out what’s what. The extra tests, your weight and history, etc, should allow a specialist to diagnose your type. Keep records of your meals and blood test results as they’ll be helpful too.


Thank you. The doses were high and I was still on 2g of Metformin a day. 

I track my meals with myFitnessPal and meal prep for ease of being able to grab a box out of the fridge every day. Lunch right now is 300g steamed greens with 150g lean chicken breast and 30g of feta cheese. Pre meal reading of 7.6

On a side note my Cholesterol was bad too.  The ratio came out at 8.9 which is apparently awful for a fit 35yo woman but I can't seem to get anywhere with what I should be doing about it.


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## Inka (May 5, 2021)

I don’t know much about cholesterol. If you have all your figures ie your total cholesterol, HDL, LDL, triglycerides, you could start a new thread here asking about others with cholesterol issues. It’s mentioned a lot here so there should be members who can offer help or share their figures with you. Did the GP suggest anything or any possible cause?

What kind of blood sugar results are you getting when you eat a more carby meal?


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## Drummer (May 5, 2021)

Titch2004 said:


> The libre is amazing and I find it so easy to use. My levels are around 7 at waking, I jump to 12ish with food and then sit around 7-9 for the rest of the day. I track my meals as it is for my training so I know carb volumes and have been carb counting since going on Met when I was 19. I don't eat bread or pasta as it it. I stick to Low GI carbs such as sweet potato or Quinoa. My middle son is peanut allergic so we don't eat much processed food and I've always cooked from scratch.
> 
> Thank you again. L


Watch out for high carbohydrate foods labelled as low GI - my gut did not get the memo and digests them only too well, and sweet potato has more carbs than the ordinary.
I have under 40 gm of carbs a day to keep my levels in the normal range - fine by me, I enjoy the things I eat - I just had a stew followed by a berry jelly - gelatine made up with half the usual amount of water, half the berries blitzed in a blender, a little sweetener. I can't use ordinary sugar free jelly any longer, it is over sweetened. I had cream with the jelly, and with coffee.


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## Titch2004 (May 5, 2021)

Inka said:


> I don’t know much about cholesterol. If you have all your figures ie your total cholesterol, HDL, LDL, triglycerides, you could start a new thread here asking about others with cholesterol issues. It’s mentioned a lot here so there should be members who can offer help or share their figures with you. Did the GP suggest anything or any possible cause?
> 
> What kind of blood sugar results are you getting when you eat a more carby meal?


I will do a Cholesterol post, thank you for the suggestion.

With carbs (30-40g of sweet pot eg) I climb up to the 12-15s


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## everydayupsanddowns (May 9, 2021)

Welcome to the forum @Titch2004 

Sorry you’ve had a less-than-clear-cut time with your diagnosis, and that the hospital clinic weren’t very responsive to your GPs ideas about LADA. 

Hope you can get some clarity soon, and begin developing an appropriate treatment plan.


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## Titch2004 (Nov 1, 2022)

Hi all, it's been a while since I posted and the frustration continues.

My GP pushed for me to have a GADA test which came back as positive @16 with the normal range being 0-5.

I've barely seen anyone over the last 18 months, at my last appt with the community outreach nurse she said that she believed my GADA results to be incorrect or an anomaly and that I was T2 and to accept it and lose more weight (I've been so off I've lost 24kgs and a lot of my strength) and to go keto to reverse it. She even wrote a letter to my GP saying that they wouldn't see me for 2-3 years or unless I needed hospital treatment...! She said my C peptide was normal and that (from my self funded libre) I was having an insulin response. I asked if the meds I was on effected the results as I Was still taking them or the tests.

They put me on Trulicity as well as the metformin and dapagliflozin I was already taking and I did start to feel better, I put 15kg back on and was able to get my strength back over the last year. We repeated the bloods and the C Peptide is lower but she said it was still in range.

I gave up pushing for help and have been using exercise and very low carb diet as a way to keep my blood sugars stable. I'm still lifting and training 4-6 times a week but I've now invested in a spin bike for home so I can start the day with some cardio to help me too.

I've been getting steadily worse over the last 4 months and for the last 6 weeks have woken on blood sugars averaging 11 and rising. The thirst is back and I've got semi permanent thrush (sorry for the gory details).

I called my GP in tears a few weeks ago as I felt so awful and he demanded they come back and see me but that it had to be a different nurse and interestingly we have a new diabetic nurse at the surgery who seems very on the ball.

Today I saw the team at my surgery and felt finally listened to. I went armed with medical journal articles pertaining to LADA and also information regarding Trulicity increasing C Peptide levels and they looked at my Libre graphs and have agreed it looks like my honeymoon period is over and I need to start insulin. I could have cried and hugged them but refrained as we're all back to wearing masks.

It's taken nearly 2 years of fighting but it finally looks like I'm going to get the correct diagnosis and the correct meds.

Thank you for all your help before and for giving your time, it's hugely appreciated.


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## trophywench (Nov 1, 2022)

Just read this whole thread.  A-HA thought I - as far as I know, solely T1 has a honeymoon period - so major step forward for womankind, it sounds to me!   Hope it all goes OK from now on for you,


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## Titch2004 (Nov 1, 2022)

trophywench said:


> Just read this whole thread.  A-HA thought I - as far as I know, solely T1 has a honeymoon period - so major step forward for womankind, it sounds to me!   Hope it all goes OK from now on for you



Thank you so much. 

The DNS said that with LADA you can have a honeymoon period where your insulin production is still sufficient and it’s anywhere from 6 months to 5 years where the T2 meds ‘work’ and you feel/get better and then you start to decline again. 

I’ve made it to 2 years not needing insulin and I don’t really want to start bolusing as I know that’s it for the rest of my life but I can’t continue feeling like this.


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## rebrascora (Nov 1, 2022)

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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## Titch2004 (Nov 3, 2022)

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?
> 
> ...


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.


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## Titch2004 (Nov 7, 2022)

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


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## everydayupsanddowns (Nov 7, 2022)

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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## Titch2004 (Nov 7, 2022)

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?


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.


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## Titch2004 (Nov 22, 2022)

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...


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## rebrascora (Nov 22, 2022)

Keeping fingers crossed for you. (((HUGS)))


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## PercyVear (Nov 22, 2022)

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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## Titch2004 (Nov 24, 2022)

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


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.


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## Titch2004 (Nov 24, 2022)

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


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## rebrascora (Nov 24, 2022)

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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