Annual review questions

[mdiaconescu]

Hello all!

I've been reading this forum for over 5 months now, and so far I've found it the most extensive and valuable source of information out there pertaining to diabetes.

I'm writing on behalf of my fiancee, who has been diagnosed with type 1 diabetes in January 2017, at the age of 29.

We've moved to the UK from Romania, at the end of May, and since then we're struggling with the medical system and with her diabetes management.

After three separate visits to the GP, inquiring about the same issue, we still haven't managed to get her blood tested. She hasn't had any blood tests done since being diagnosed.

She's having a difficult time controlling her blood glucose levels on a daily basis, with frequent hypos and even more frequent hypers. She's still in the honeymoon period, with fluctuating pancreas activity, which makes it even more confusing for her. I see her panicking and getting more and more depressed, and to be honest we don't know what to do.

In the last month she started complaining about tingling and burning sensations in her feet and lower legs and her eyesight is getting worse (she was already wearing glasses when she was diagnosed - hypermetropia).

We've changed our diet, lowering our carb intake by more than 60% so far. She's been adjusting her insulin doses on her own, lowering them from 6-7 units of NovoRapid before each meal, to 2-5 units depending on the meal and insulin level at the time of the injection, and her Levemir from 16 units down to 12, in the morning and evenings.

I'm currently trying to get her in the DAFNE program, which I'm sure will help her both better manange her blood sugar and raise her morale.

In the meantime, we still don't know how to go about getting her blood, feet and kidneys tested or if there are any institutions, other than the GP which can help in this regard. We're currently living in London, St. Pancras / Mornington Crescent.

The only information we have so far about living with diabetes are the ones that we got from her first doctor in Romania and the research we've done online since.

My question is how can we go about her having an annual review and how can this process be sped up, seeing that we had to wait for at least two weeks for every GP appointment, and an extra 4-6 weeks for any refferal letter to arrive to us through mail? Is there any other institution/organisation where we can get more information?

I apologize for the long post and I convey all my gratitude and admiration for this great community that you created, and for the help and support that you offer selflessly on a daily basis in a world where selflessness is dwindling.

May we all have peace, light, love and joy!

Namaste!

 

[Cobia]

Hi im not in the UK so not sure what the system is.. i would have thought the tests would have been standard procedure and regular. They are for me.


@himtoo @Juicyj for a start i hope they can help to point you in the right direction.

Maybe this thread should be moved there are heaps of type1 here.

I hope to read your fiancee gets better control.

Bumping the thread to the top should help too.

 

[himtoo]

Hi there @mdiaconescu
welcome to the forum !
it does sound like you are having a tough old time of it lately !!

as a type 1 -- I would suggest you demand ( very politely ) a referral to a hospital and an endocrinoligist
it may be a few month wait but will be more specific to needs.

The NHS is not the fastest system in the world but does generally serve us well


in the meantime here is a link to an online carb counting course -- this could help in matching insulin doses to carb intake --- https://www.bertieonline.org.uk/


as @Cobia has suggested -- would you like this thread moved to the type 1 diabetes section of the forum ???????

 

[mdiaconescu]

Hello and thank you for the prompt reply!

Yes, if possible move the thread wherever you think best. I've already found and signed-up for Bertie yesterday and currently going through their website; they do offer a lot of useful info.

Thanks for the tip, we'll book an appointment with the GP first thing tomorrow, follow your advice and see where that leads.

I'll keep you posted on how the situation evolves.

Untill then, stay safe, stay well!

 

[ann34+]

do you mean that she is adjusting insulin but not using blood testing to work out how to adjust, or just that she has testing equipment at home, but has not had any blood tests done at her doctors or a hospital?
.As mentioned above, she needs to be properly tested and the type one diagnosis confirmed at a hospital. Re Type one, if that is the correct diagnosis, insulin and strips to test blood glucose several times a day are essential, esp as, particularly at this time of year, the body's response to any illness could lead to a fast rise in blood glucose to the extent that, despite some insulin, ketones are produced and an emergency is created.
If she has worries re hypos, and unstable diabetes etc and is not able to address them at the GP, or is not feeling well, despite the fact that both of you have tried to get help with the GP, then a start would be to go the the nearest urgent care centre or A and E. They will have to send a report re the situation to your GP, who may have not understood her situation due to the time pressures that there are now at GPs in the uk, You are lucky as you are in central london where there are good hospitals, best wishes

 

[mdiaconescu]

do you mean that she is adjusting insulin but not using blood testing to work out how to adjust, or just that she has testing equipment at home, but has not had any blood tests done at her doctors or a hospital?
.As mentioned above, she needs to be properly tested and the type one diagnosis confirmed at a hospital. Re Type one, if that is the correct diagnosis, insulin and strips to test blood glucose several times a day are essential, esp as, particularly at this time of year, the body's response to any illness could lead to a fast rise in blood glucose to the extent that, despite some insulin, ketones are produced and an emergency is created.
If she has worries re hypos, and unstable diabetes etc and is not able to address them at the GP, or is not feeling well, despite the fact that both of you have tried to get help with the GP, then a start would be to go the the nearest urgent care centre or A and E. They will have to send a report re the situation to your GP, who may have not understood her situation due to the time pressures that there are now at GPs in the uk, You are lucky as you are in central london where there are good hospitals, best wishes

She has testing equipment at home. She's currently testing around 5 times a day at least. I'm reffering to the proper blood tests, or Diabetes Review as I've noticed it's called, and her eyes, kidneys and feet.

At the moment she hasn't shown any sign of kidney problems, and I check her feet every night and for the moment they seem fine, except the tingling/burning sensation. What concerns us most at the moment is her eyesight and the possibility of ketones in her blood as she's had some pretty high hypers, the highest being 24.1, and the latest 12.7.

Yes, regarding the GP, I've arrived at the same conclusion; it's hectic for them, especially this time of year as I gather.

In any case, thank you for the advice. We will try going to an urgent care centre and hopefully the situation is going to resolve itself without any bad news.

 

[Nidge247]

Hello all!

I've been reading this forum for over 5 months now, and so far I've found it the most extensive and valuable source of information out there pertaining to diabetes.

I'm writing on behalf of my fiancee, who has been diagnosed with type 1 diabetes in January 2017, at the age of 29.

We've moved to the UK from Romania, at the end of May, and since then we're struggling with the medical system and with her diabetes management.

After three separate visits to the GP, inquiring about the same issue, we still haven't managed to get her blood tested. She hasn't had any blood tests done since being diagnosed.

She's having a difficult time controlling her blood glucose levels on a daily basis, with frequent hypos and even more frequent hypers. She's still in the honeymoon period, with fluctuating pancreas activity, which makes it even more confusing for her. I see her panicking and getting more and more depressed, and to be honest we don't know what to do.

In the last month she started complaining about tingling and burning sensations in her feet and lower legs and her eyesight is getting worse (she was already wearing glasses when she was diagnosed - hypermetropia).

We've changed our diet, lowering our carb intake by more than 60% so far. She's been adjusting her insulin doses on her own, lowering them from 6-7 units of NovoRapid before each meal, to 2-5 units depending on the meal and insulin level at the time of the injection, and her Levemir from 16 units down to 12, in the morning and evenings.

I'm currently trying to get her in the DAFNE program, which I'm sure will help her both better manange her blood sugar and raise her morale.

In the meantime, we still don't know how to go about getting her blood, feet and kidneys tested or if there are any institutions, other than the GP which can help in this regard. We're currently living in London, St. Pancras / Mornington Crescent.

The only information we have so far about living with diabetes are the ones that we got from her first doctor in Romania and the research we've done online since.

My question is how can we go about her having an annual review and how can this process be sped up, seeing that we had to wait for at least two weeks for every GP appointment, and an extra 4-6 weeks for any refferal letter to arrive to us through mail? Is there any other institution/organisation where we can get more information?

I apologize for the long post and I convey all my gratitude and admiration for this great community that you created, and for the help and support that you offer selflessly on a daily basis in a world where selflessness is dwindling.

May we all have peace, light, love and joy!

Namaste!

Firstly, welcome to the Forum; you've come to the right place

You need to be asking for full blood tests to include having her HbA1c tested; which will show (amongst other things), her overall picture of blood sugars. This then marks a definitive point you can work from.
It will also determine which most likely type of diabetes she has.

If her BGs (blood glucose levels) are high, I would expect symptoms as you describe. Unfortunately with all the cutbacks in the NHS, I am finding that the routine tests have now been dropped, and it is up to me to contact the surgery at the due time to insist on the next blood test being done. (Which so far they have been happy to complete.)

Keep in touch and let us know how you get on

 

[ann34+]

She has testing equipment at home. She's currently testing around 5 times a day at least. I'm reffering to the proper blood tests, or Diabetes Review as I've noticed it's called, and her eyes, kidneys and feet.

At the moment she hasn't shown any sign of kidney problems, and I check her feet every night and for the moment they seem fine, except the tingling/burning sensation. What concerns us most at the moment is her eyesight and the possibility of ketones in her blood as she's had some pretty high hypers, the highest being 24.1, and the latest 12.7.

Yes, regarding the GP, I've arrived at the same conclusion; it's hectic for them, especially this time of year as I gather.

In any case, thank you for the advice. We will try going to an urgent care centre and hopefully the situation is going to resolve itself without any bad news.

Hi, i had not realised she had been testing quite a bit during every day. The urgent care centre may not - depending on their rules - help, Those results are not terrible, especially at this time of year. I am a very long term type one, now on the pump, the hospital sees me as well controlled, yet the last 10 days take in a 20.6, a 3.1, etc - due to low level illness, and things are still not stable - 16.9 last test - but this is the nature of Type one for me at any rate . Main thing is to test and test, be hypo aware (try and avoid these at all times as the body's response to a hypo is to send out chemicals with an anti insulin effect, thus making any swings worse). It is important not to have any ketones, ketone testers are cheap on the internet if not prescribed,. Probably best, at least until proper advice, to keep carbs at the same level every day, not too low and not too high, do not eat when high blood glucose even though this is a pain, keep calm, and plough on. Being worried can itself raise or even lower blood glucose! Hopefully the GP, if both of you write the request in a letter explaining the situation, even before the appointment, will refer your fiance to a hospital clinic, but in the meantime your GP practice will have to do yearly full blood tests for diabetics, so maybe the GP, as mentioned earlier, just has not understood.

 

[bobcurly]

The GPs are snowed under but there should be a practice nurse who can arrange the tests for you and do the annual review. Ask the surgery for an appt with the diabetic nurse while you wait to see hospital

 

[Bluey1]

I'm also not in the UK, but I have had a lot of experience with GP's. There are a some really bad ones, some good and some that are amazing. Once you get a great GP they will hook you up with all the other great professionals. They hunt in packs. My Endo is amazed at the tests my GP orders.

It will take a bit of work, but go Dr shopping and although I doubt referrals here would be permitted, if you say which general area you are in if you are lucky you will find someone here that will PM you with a great GP in your area. A good GP will order the correct tests and spend time explaining them and any additional assistance you need. Please keep looking and find a good GP, it may even save your fiance's life.

 

[ann34+]

I'm also not in the UK, but I have had a lot of experience with GP's. There are a some really bad ones, some good and some that are amazing. Once you get a great GP they will hook you up with all the other great professionals. They hunt in packs. My Endo is amazed at the tests my GP orders.

It will take a bit of work, but go Dr shopping and although I doubt referrals here would be permitted, if you say which general area you are in if you are lucky you will find someone here that will PM you with a great GP in your area. A good GP will order the correct tests and spend time explaining them and any additional assistance you need. Please keep looking and find a good GP, it may even save your fiance's life.

Hi, i am a bit surprised at your post, everywhere i have been in England, up to now, has had a system whereby the GPs have a catchment area which they agree that they will take patients from. I have had one or two very good GPs, but, on moving just a mile or two out of the catchment area, i have had to leave - sad for me, but reasonable, as they have to take on patients moving into the area. But it does mean that i have never had more than one or two possible GPs available.