I don’t know what to do

[Jaylee]

I haven’t got ketones. Only high bgs. I’m keeping a close eye on it. When I said a smidge it’s 0.2 and that was the other day. More often than not I don’t have any trace at all. Believe me when I say I won’t let myself get in that position again. I learned the hard way x

You may have a trace of ketones due to not eating or an LC or ketogenic diet.

However. Those high BGs you're testing at? Don't ever feel you're bothering 111 if they arn't comming down..

 

[TashT1]

I have accessed the patient app as my doctors are not seeing patients. I have been to the point and requested a referral to an endocrinologist and given my reasons. I don’t know how many times I have to have the same conversations with them to be honest. Maybe this time I will be referred. (They will prob be glad to see the back of me) moral support and knowing I’m not over reacting has helped me. They should be in touch today with their response. I can’t see why it’s such an issue. Unless it’s a financial benefit to them for me to be seen by the gps and not a specialist at a hospital. The mind boggles

If the GP will not refer you, you can refer yourself. Google your local hospital trust & PALS. This is the patient liaison service & supports self referrals or second opinions. The GP really has nothing to gain by not referring you though, you still stay on their patient lists so they still receive funding.

 

[Marie 2]

I am thinking you might try to bypass the doctor. next time you are high, either call 111 and if they can't solve it go to the hospital and tell them you don't feel well, that your blood sugar is high. Make sure you tell them you've already had DKA once before. At the very least they might give you an insulin shot and maybe that referral or a letter saying you need to be referred? That's so ridiculous saying not to test, rely on an A1c that you only get every 3-6 months? How sick do you have to get?

If you prefer the other GP in the practice route, just tell them you want a second opinion because you're not feeling well and want to see what they think about how you are doing.

 

[Oldvatr]

As a T2D who also ran with extended periods of stratospheric bgl levels, I empathise. In my case I was able to get my sugars back under control using diet, but you have already tried that and it does not seem to be effective. If you started in March, then it should be showing benefits by now. So I side with the others here, and strongly advise you get a second opinion asap and get referred to a consultant.

With Covid-19 rife tho, this is not so simple since endo's are usually attached to the main hospitals and pretty busy right now. I think most County hospitals can carry one out, but smaller hospitals may not offer the test so it may be a postcode lottery. There are private health outfits offering it too.

 

[Mummybear3]

As a T2D who also ran with extended periods of stratospheric bgl levels, I empathise. In my case I was able to get my sugars back under control using diet, but you have already tried that and it does not seem to be effective. If you started in March, then it should be showing benefits by now. So I side with the others here, and strongly advise you get a second opinion asap and get referred to a consultant.

With Covid-19 rife tho, this is not so simple since endo's are usually attached to the main hospitals and pretty busy right now. I think most County hospitals can carry one out, but smaller hospitals may not offer the test so it may be a postcode lottery. There are private health outfits offering it too.

I actually started this journey in June last year and it’s been a steady progression since. I went to hospital in March and since then it’s been ridiculously controlled. I’ve just had a snoop on my app, my request has been read but I haven’t heard back from them as yet. So will ring them tomorrow if I don’t hear anything. They attach a note when you send a request stating they will contact me up til 6:30 this evening. It’s true about covid etc and I understand that totally. But knowing I’m on their system and will be seen would be a massive relief.

 

[Rose22]

I actually started this journey in June last year and it’s been a steady progression since. I went to hospital in March and since then it’s been ridiculously controlled. I’ve just had a snoop on my app, my request has been read but I haven’t heard back from them as yet. So will ring them tomorrow if I don’t hear anything. They attach a note when you send a request stating they will contact me up til 6:30 this evening. It’s true about covid etc and I understand that totally. But knowing I’m on their system and will be seen would be a massive relief.

I am sorry to hear you’ve been having a rubbish time of it! I had a gp that told me for two years straight I was type 2. I had this feeling that I wasn’t! They put me on, metformin, slow release metformin, alogliptin, empagliflozin, Gliclazide and all the whilst I was seeing high numbers, 18, 24 and waking 11, 12 etc. I was trying low carb and exercising more. I felt really unwell. I was allergic to Gliclazide it made my skin itch and blister. I was so fed up and had been to gp so many times when they finally agreed to refer me to the endocrinologist. He put me on Repaglinide whilst waited for my blood test results to come back, they can take up to 12 weeks as they go to oxford or Exeter. anti Gad and islet cell positive, late onset type 1. I thought so as I’d had previous gestation diabetes over ten years and a family history of diabetes including my grandmother who was Diagnosed Type 1 in her 30s as well. I think if you really feel you’re perhaps not a type 2, you should keep asking the gp to refer you. I am surprised they haven’t as you’d been in hospital with DKA! You’d think it’s the least they could do. My own experience was go through a list of drugs (all making me feel ill) and tell me to loose weight. Was only a little over weight, not really enough to justify an out right type 2 diagnosis. Care since I’ve been under the consultant, and more importantly the specialist diabetes nurse team is far far far better! Really helps when it’s people who specialise in diabetes. Don’t be afraid to voice your concerns and keep pushing for the care you should get. I said I want anti gad tests done to show for sure then treat, not the other way around. Now my waking blood sugars are much better and I’m six months on insulin.

 

[NicoleC1971]

I actually started this journey in June last year and it’s been a steady progression since. I went to hospital in March and since then it’s been ridiculously controlled. I’ve just had a snoop on my app, my request has been read but I haven’t heard back from them as yet. So will ring them tomorrow if I don’t hear anything. They attach a note when you send a request stating they will contact me up til 6:30 this evening. It’s true about covid etc and I understand that totally. But knowing I’m on their system and will be seen would be a massive relief.

Hope you get to see someone at least screen to screen. Covid 19 is NOT rife and they should have time to make contact at least....Just have the questions ready and your data (you should know your bgs, hba1c, lipids and ideally c peptide levels to check insulin function).

 

[Mummybear3]

I am sorry to hear you’ve been having a rubbish time of it! I had a gp that told me for two years straight I was type 2. I had this feeling that I wasn’t! They put me on, metformin, slow release metformin, alogliptin, empagliflozin, Gliclazide and all the whilst I was seeing high numbers, 18, 24 and waking 11, 12 etc. I was trying low carb and exercising more. I felt really unwell. I was allergic to Gliclazide it made my skin itch and blister. I was so fed up and had been to gp so many times when they finally agreed to refer me to the endocrinologist. He put me on Repaglinide whilst waited for my blood test results to come back, they can take up to 12 weeks as they go to oxford or Exeter. anti Gad and islet cell positive, late onset type 1. I thought so as I’d had previous gestation diabetes over ten years and a family history of diabetes including my grandmother who was Diagnosed Type 1 in her 30s as well. I think if you really feel you’re perhaps not a type 2, you should keep asking the gp to refer you. I am surprised they haven’t as you’d been in hospital with DKA! You’d think it’s the least they could do. My own experience was go through a list of drugs (all making me feel ill) and tell me to loose weight. Was only a little over weight, not really enough to justify an out right type 2 diagnosis. Care since I’ve been under the consultant, and more importantly the specialist diabetes nurse team is far far far better! Really helps when it’s people who specialise in diabetes. Don’t be afraid to voice your concerns and keep pushing for the care you should get. I said I want anti gad tests done to show for sure then treat, not the other way around. Now my waking blood sugars are much better and I’m six months on insulin.

This is exactly me. Cocktail of different oral meds and loose weight blah blah blah. All of which making me ill. I think eventually when all other meds have been explored then they will give me insulin anyway as they’ll have exhausted all other options. X

 

[Mummybear3]

Just rang the doctors because I haven’t heard back. The receptionist said yes. He’s recommended a diabetic review with a doctor. (I’ve just had that!!!) so I’ve asked for the doctor who is a partner and she said oh, well he’s busy til mid September. So I’ve said I want to speak to him, diabetes isn’t going to go away!! I also explained that I didn’t ask for a review. I asked to be referred and she said. She can’t comment on that because it’s between the doctor and myself. So, currently waiting for a phonecall with an appointment to discuss the same thing over again. I feel totally deflated. But not shocked about their approach either. Thanks for listening x

 

[DCUKMod]

@Mummybear3 - I've just caught up with your thread, and to be honest, you are just on a revolving door situation here; going round and round, getting nowhere.

Under the NHS charter, you are entitled to a second opinion, but at this stage, that second opinion would likely be seen as most fitting by another GP. Is there another Doctor in your Practise you could speak with?

It does cost your Practise to make a referral to secondary care, so I know some places are under the cosh to keep those costs down, but that still should not be a barrier to proper care.

If nothing else, your GP will have the support of the hospital/clinic system, with the potential for rapid response (rapid being within a couple of days, rather than weeks). My own GP used this a few times, relating to my wonky thyroid that just wouldn't get with the usual plan, in terms of diagnosis, or treatment.

In brief, the GP writes an email enquiry to the local specialist area, with a Consultant, or a member of their team responding - depending on the issue. In my case, the responses were usually within 24 hours, but I'm guessing that can vary from department/clinic to department/clinic.

For me, the result was to eventually get onto the correct care pathway for my condition, which continues to defy "the norm", but it got me there in the end. To be fair, I learned a load about how the NHS works (or can work) through those experiences, and largely via a very candid GP who openly said at times she just didn't understand what was going on with me. At least she was honest, and we went on a huge learning adventure together!

If you are still considering paying for blood tests privately, I might take a different tack on it, and suggest instead you pay for a private consultation with an Endocrinologist. That way, you will have at least a proper assessment. You could take your NHS blood results with you for him to review, and if he agrees you need additional tests, he can do one of the following:

• Instruct they be done, and you pay for them
• instruct your GP to order them up
• instruct your GP to make an NHS referral to him, in his usual NHS location

In my own case, the Endo instructed my GP to order over 40 (yes, 40) blood screens to get to the bottom of things (it didn't, but now I know that at that point I didn't have a lot of very unpleasant things). To be clear, most of these screenings were based on my own and family medical histories.

Whilst you would need a GP referral for a private consultation, I have never found a GP unwilling to allow me to spend my own money on trying to improve my health. If your own GP will not provide a private referral, there are private GPs around who would be quite happy to be your gateway to specialist care. You can just Google "private GP near me" or private GP near + your postcode. You might be surprised how many there are.

Those would be my tactics. I hope they give you some other options to ponder, but if I can help further, please let me know.

Something needs to happen for you.

 

[AllMacK]

Some of you may know I’ve had a bit of a tough time recently managing my blood sugars, quick re cap.....was on metformin and diet (low carb) during the heat wave in March my blood sugars were crazy high and I ended up being admitted with a dka. The doctors doubled my metformin which made me poorly. So they changed it to gliclazide and metformin and that did not agree with me. They swapped the gliclazide for Sitagliptin (Januvia) and I feel like rubbish, Shaky, aching all over. Bunged up nose and headaches and to be honest bloods don’t seem to be lowering. I’m eating next to nothing because I feel sick or have no appetite and On average I’d say my blood sugars are 18 mmol. On waking they are usually around 12.5 and I have seen 29 in the late evening. I’m starting to think that I may now not be producing enough insulin. Because surely if I were I wouldn’t be this high all the time. I’d say my spikes have levelled a little but running this high all the time must be damaging me in other ways. I don’t know what to do. Is it time for insulin? Is there something else I can try before it? Does it take longer than I’m giving it to change my levels? I’m constantly thinking about every side effect, every food I eat, everything I drink. I would probably say I’m having a melt down and have hit a wall with it all. My doctor comes across as so relaxed about it which makes me question if I’m over reacting. But I just feel so sorry for myself like there’s no end to the way I feel. The medication I’m taking feels like I’m poisoning myself each time I take it. But I’m embarrassed because this is my third change in a short period of time. I don’t want her to think I’m a hypochondriac. I’m not, I just want to feel well again. I suppose writing this to people who share/understand the way diabetes can make you feel helps me and any advice or similar stories would give me a little boost. Thanks x

I know exactly how frustrated you are felling right now as I am having a similar experience
I was diagnosed 3 yrs ago with T2 after going in for a total hip replacement I was told if my blood glucose went up any further they would postpone the op
I am 54 yrs old 80 kg And 177cm I no longer eat complex carbs never really had a sweet tooth and yet I am now being told I have to go on insulin by the diabetes clinic have been on metformin (several brands) Sinjardy Surkato and now glicizide and sitagliptin
I am only eating about 1000 kcal a day and I teach and train Karate (Zion at present) I am fed up with my BG rising to mid teens every time I eat something
I have only just been tested for T1 last month and have read you shouldn’t take Glicizide if you are T1
The only to do is to ask to be referred to a Consultant and not the nurse or GP and it’s your right to do so