How to get the support and advice I need from the NHS

[Guineveretoo]

I have a myriad of health problems, some of which are being worked on by the NHS, but not all. I don't know how to get the help I need. I have been trying!

Apologies for the massively long post - there is a lot going on!

[ETA - if this is tl;dr, please can people advise on how often I should be testing my blood glucose and what to do with the results. Also, can anyone advise whether I can self refer for help on diabetes control/management when my GP is not providing this]

When I was previously on this site, 12 years ago, apparently, I had very few health problems. Since then, I have had kidney cancer - had a kidney removed in December 2014. My remaining kidney is not functioning fully, and I am very close to kidney failure. Clearly, this has an impact on my diabetes, and on the medication I take. I saw a diabetic kidney specialist person once, a year or so after the surgery, but he was actually reassuring and said that my kidney, although not functioning normally, was stable, so not to worry about that.

I have also had endometrial cancer, which was diagnosed at the height of the pandemic, so that was nice. Apart from fighting to get my diabetes sufficiently controlled to be able to have the operation, that cancer was removed, and doesn't affect my diabetes.

In 2019, I was diagnosed with COPD. That has got a lot worse in recent times and I appear to suffer from sleep apnea. I first asked the doctor about this a long time ago, but was only recently referred for a sleep study, and my blood oxygen level dropped below 90 during the night, which has terrified me.

I have a rare liver condition which has to be monitored, but no treatment as yet. Scary, but the new consultant I am seeing about that has been reassuring. I also have fatty liver disease. I suppose that will affect my diabetes.

A few years ago, I was told I had iron deficient anaemia - that is a bit of a long story, but I am now on iron tablets and went for a follow up blood test a couple of days ago. Unclear how that is affecting my diabetes, or whether it is causing my fatigue, but it has certainly complicated medicine taking, as I now know I can't take the iron tablets within 2 hours of the meformin.

For some years now I have had cardiac issues and high blood pressure. I take lots of blood pressure medication and statins, but am still getting dizziness and racing heartbeats, and no-one has quite worked out, yet, whether it is caused by the iron deficiency, COPD, the heart, the kidney, the diabetes or the sleep apnea.

I suffer from chronic fatigue which is making my life almost impossible. I live alone and it really is hard to cope with day to day life.

I find I am often too exhausted in the evenings to cook, even when I have bought some lovely veggies specially. I recently went out and bought some meal replacement drinks so that I would at least get some nutrition. When I was first diagnosed, I saw a lovely dietitian who was really helpful, but that was before I was so ill and exhausted that I wasn't able to look after myself. No point in going back again, even if that service was still available, as I do know the theory of how to feed myself - I just don't have the energy.

I had my cataracts removed two years ago, which was actually very stressful because, at the pre-op appointment, they told me my blood sugar was too high for them to proceed, and that they would need to postpone the procedure until I got it under control. I got the doctor to increase my metformin so I am now on double the dose I was, and that seemed to do the trick so that I was able to go ahead and have the surgery.

When I went for my routine diabetic retinopathy screening a few months ago, it came back with a diagnosis of maculopathy and I was sent to have some more detailed pictures of my eyes taken. The specialist told me at that appointment that it would be fine, so long as I got my diabetes under control, and that she was going to write to my GP to say this.

I was actually very scared about this diagnosis, and asked to see someone at the GP practice, so I could find out a bit more about the implications of diabetic maculopathy, but the GP I saw was, simply, dismissive and really not helpful.

Another GP, after I had seen the specialist, sent me for an HBA1C (I also told him about the hypos) but this came back showing that the diabetes is under control, so he says. It was 55. I pointed out that the specialist had asked for me to be referred, and he said that she had actually only recommended it, not requested it! But he said that he would try and refer me.

The diabetes team, whoever they now are (I know that the community team was disbanded a few years ago) rejected this referral, but I was told to make a "routine appointment" with my GP to talk about medication. So I did. That was the appointment a few days ago.

During that appointment, he told me that my diabetes was well managed, and restated that he didn't think I had been getting hypos. He thought it might be the heart problems I have been having, which have certainly caused me to feel dizzy sometimes. He asked me if I had measured my blood glucose, but I told him that I had repeatedly been advised not to, and have never been offered a machine.

So, he got one for me to take away - said he wanted me to measure my blood glucose next time one of these hypos happened. I did point out that I was very, very shaky when it happened, and really not able to do such a thing, but he wasn't interested.

However, he showed me how to use the machine (very quickly, and I didn't really get it) by testing me, and it came out at 18.5. At this point, he clearly got a bit panicky and told me to provide him with a urine sample. I wasn't able to, so he told me I had to wait in the waiting room until I was able to. I went to the car and drank lots of water until I was able to do so. I was really upset as well, as I knew what he was looking for (this had happened to me once before, during the cataract debacle, and the GP had sent me to A&E with suspected whatever it is called to do with ketones). Anyway, it was fine, and my blood sugar had reduced to 14.5 by that time - about an hour or so later - so he sent me on my way, clutching this blood glucose monitor, but with no real idea what I was supposed to do with it. He said to measure my fasting blood sugar. But didn't say why.

So that is where I am. I tried to measure it yesterday, but messed it up, and got an error message. Fortunately, there happened to be a nurse at the practice yesterday and I was able to go and see her and she showed me how to do it, and what to do with the lancet thing afterwards.

ETA this morning, my fasting blood glucose was 6.5

But the fact that it was 18.5 in the GP the other day, and then 14.5, and that it was too high went I went for the pre-op and that i have had a few incidents of what I believe to be hypos etc. etc. is suggesting that, despite what the HBA1C is saying, that it is not well controlled.

I am very ill and don't know what to do.

 

[grantg]

I'm tagging a few people as seperate conditions
@Grant_Vicat had some kidney issues before he had transplant and maybe able to offer some advice. Could be useful to post eFGR result/stage.

Hopefully the followup appt for iron deficiencey goes well Several CKD people i know have had low iron requiring various treatment types. My mum before she had regular venofer infusions (tablets were not enough for her, other family member used to get same infusions but tablets alone now suffice) used to feel very fatigued. When iron count was up she was so so much better able to be more active.

maculopathy: tagging a couple of others who have/had: @Mrs SLD, @Jaylee.

Its a very good step in the right direction finally been given a blood glucose monitor Have they recremmend at all testing other than fasting levels? glad u didn't have dka.

I've found focusing on one thing at a time is helpful. Breaking up all issues into smaller more managable pieces is easier to deal with with rather than all at the same time which can be very overwhelming. If you find general mood effected some CBT may assist ensure at least your GP knows.

What was the error message on your BG Machine? I've had a few as droplet of blood was not sufficient amount. Did the dr ensure that washed hands alongside through dried? Heres a useful video on how to test your BG using the machine that the dr gave you.

https://www.diabetes.co.uk/blood-glucose/how-to-test-blood-glucose-levels.html e4 error code usually is not enough droplet. You'd require to insert a new test strip.

change lancets (if blunt starts to hurt more...) advise dsn gave me was to change after each use.

https://www.glucorx.co.uk/wp-content/uploads/2019/08/GlucoRx-Lancing-device-Instructions.pdf depending on your device instructions should be very simular. can look up your own specific device for details. Warm fingers = easier /less sore remember to rotate test site between fingers.

best wishes.

 

[lessci]

I can't comment on your other heath conditions but have you made use of the dexcom cgm free trial https://www.dexcom.com/en-GB/dexcom-one-plus-sample. This would show you if you're having highs & lows which could quite easily "balance" each other out as show a relatively stable (acceptable to your GP) A1C. Your low Iron level could also be affecting your results. I'm the opposite and naturally have to much iron, so an A1C shows my results are higher than they really are and have to have a fructosamine test instead.I know it's not easy, but try not to worry as that stress is one of the 101 non food related reasons for a high Blood Glucose finger prick test result

 

[Guineveretoo]

Thanks for responding, and for tagging people.

The error message was E1 - I didn't bother looking up what it meant, as it had taken me ages to get to that stage, and it was clear I needed advice on how to use the blasted thing. Fortunately, i was able to squeeze in between appointments and the practice nurse told me how to use it.

But, other than telling me to test when I get a hypo, and then telling me to do a fasting one, the GP has said nothing else.

What is dka?

The iron deficiency thing is a long story that i have not related, and which is a bit scary.

 

[Guineveretoo]

I can't comment on your other heath conditions but have you made use of the dexcom cgm free trial https://www.dexcom.com/en-GB/dexcom-one-plus-sample. This would show you if you're having highs & lows which could quite easily "balance" each other out as show a relatively stable (acceptable to your GP) A1C. Your low Iron level could also be affecting your results. I'm the opposite and naturally have to much iron, so an A1C shows my results are higher than they really are and have to have a fructosamine test instead.I know it's not easy, but try not to worry as that stress is one of the 101 non food related reasons for a high Blood Glucose finger prick test result

no - I know nothing about this free trial. Will look in to it!

 

[lessci]

no - I know nothing about this free trial. Will look in to it!

It's only 10 days , but can be a really eye opener as to what affects your levels, Libre used to do one too, but I think that's currently not available in the UK

 

[grantg]

What is dka?

related to ketones. Diabetic Ketoacidosis
some info on it: https://www.nhsinform.scot/illnesses-and-conditions/diabetes/diabetic-ketoacidosis-dka/

also see https://diabetes.co.uk/in-depth/nutritional-ketosis-vs-dka/ slightly higher levels can be normal if in state of deietry ketosis which would be normal for slightly more elevated numbers.

Libre used to do one too, but I think that's currently not available in the UK

abbott's have reintroduced cgm trial 15 days via their libre2plus sensors. https://www.freestyle.abbott/uk-en/getting-started/sampling.html

imo i would likely order both dexcom and the libre keeping one to hand using maybe the dexcom first. Only reason for dexcom first is your still waiting on results and new meds taking give a little time to see if meds effect (if changes/stablises). less worrying will likely help too with BG levels so many things can effect them. Stress being one of the non obvious causes.

 

[Grant_Vicat]

Thanks for the tag @grantg . Hi @Guineveretoo I'm sorry to hear about all your problems and the resulting anxiety. Do you know what your creatinine level is in your blood and what your gfr is? The reason I ask is that I had 40 years of CKD which began when I was 15 (after 14 years Type1) and was slowed down simply by vastly improved blood glucose readings having been read the riot act when I was nearly 21. My HbA1c results were exemplary for many years, but as you suggest, averages can take in readings from as low as 1.1 and as high as 32.5 in my case. The latter was caused by faulty insulin. But these were generally random enough to allow my kidneys to soldier on until a transplant in 2013 exactly 40 years after CKD was noted. If you are still worried. I was also prescriped medication for hypertension as well as being given advice from a renal dietitian which effectively advised me to eat less phosphates. This is a good link:

Phosphorus and Your CKD Diet

Phosphorus is a mineral found in your bones. Along with calcium, phosphorus is needed to build strong healthy bones, as well as, keeping other parts of your body healthy.

www.kidney.org

But as I am speaking purely from personal experience, before you embark on such a regime I strongly advise you to talk to a nephrologist to assess your present condition and advise you accordingly. Might I suggest looking up contact details for your local nephrology department so that you can speak directly? I wish you the best possible outcome.

 

[Jaylee]

Thanks for responding, and for tagging people.

The error message was E1 - I didn't bother looking up what it meant, as it had taken me ages to get to that stage, and it was clear I needed advice on how to use the blasted thing. Fortunately, i was able to squeeze in between appointments and the practice nurse told me how to use it.

But, other than telling me to test when I get a hypo, and then telling me to do a fasting one, the GP has said nothing else.

What is dka?

The iron deficiency thing is a long story that i have not related, and which is a bit scary.

Appreciate the tag @grantg , I’ll try to help where appropriate.


Hi, @Guineveretoo

You seem to have a fair bit going on. By all means quote or tag me & ask direct questions.

The meter error message can or could frustratingly mean anything from a test strip error like improper insertion to the machine. Maybe Not enough blood. Or even the meter is too cold to perform the test?
Depends on the meter. What meter do you use?

The maculopathy (or “something”.) was picked up by a certain high street optician “I shoulda gone to” earlier? . (Over a decade back.) They contacted my GP, then I was referred to an ophthalmology department at the hospital.
Keeping a decent management of diabetes does help along with any treatment offered.
But I did find out that a short sharp shock pulling BG levels in line can sometimes be detrimental to eye health?
If you are to bring your HbA1c down… Do it slowly? (Decompression like a diver to avoid the “bends.”)

I got away with “it.” Till the point I took my T1 seriously..

 

[grantg]

please can people advise on how often I should be testing my blood glucose and what to do with the results. Also, can anyone advise whether I can self refer for help on diabetes control/management when my GP is not providing this

just spotted your edit. must of overlapped whilst i was replying sorry.

To know how certain foods effect your glucose levels alongside information you could give to diabetic team to assist in treatment. Test before meals alongside 2 hours afterwards, if your body is handling ok, there should be a difference of less than 2mmol. eg pre breakfast you were 6.5 so anywhere to 8.5 at the 2 hour mark would be normally considered ok. You could ask for a referal to see diabetic dietician/dsn who can work out a target range based on your particular needs. If choosing to do this, it would be extremely helpful to keep a food diary (then keep a seperate list of what 'works well' for you, foods that are your happy to 'occasionally have' or simply 'smaller portion' might work, alongside foods should perhaps 'avoid. You may require to buy some of your own test strips, depending on what was written with your initital prescription (if go above what gp has prescribed). keep those seperately if you choose to monitor at other times so costs can be kept down.

if based in scotland: https://mydiabetesmyway.scot.nhs.uk/know-more/
if based england/wales https://elearning.diabetesmyway.nhs.uk

Can see some results and targets on the above pages if signed up alongside some other infomation & resources which doesn't require a referal.

 

[Guineveretoo]

just spotted your edit. must of overlapped whilst i was replying sorry.

To know how certain foods effect your glucose levels alongside information you could give to diabetic team to assist in treatment. Test before meals alongside 2 hours afterwards, if your body is handling ok, there should be a difference of less than 2mmol. eg pre breakfast you were 6.5 so anywhere to 8.5 at the 2 hour mark would be normally considered ok. You could ask for a referal to see diabetic dietician/dsn who can work out a target range based on your particular needs. If choosing to do this, it would be extremely helpful to keep a food diary (then keep a seperate list of what 'works well' for you, foods that are your happy to 'occasionally have' or simply 'smaller portion' might work, alongside foods should perhaps 'avoid. You may require to buy some of your own test strips, depending on what was written with your initital prescription (if go above what gp has prescribed). keep those seperately if you choose to monitor at other times so costs can be kept down.

if based in scotland: https://mydiabetesmyway.scot.nhs.uk/know-more/
if based england/wales https://elearning.diabetesmyway.nhs.uk

Can see some results and targets on the above pages if signed up alongside some other infomation & resources which doesn't require a referal.

any ideas how to get to see a diabetic dietician? Not sure what a "dsn" is, but how can I see one of them?

 

[Guineveretoo]

just spotted your edit. must of overlapped whilst i was replying sorry.

To know how certain foods effect your glucose levels alongside information you could give to diabetic team to assist in treatment. Test before meals alongside 2 hours afterwards, if your body is handling ok, there should be a difference of less than 2mmol. eg pre breakfast you were 6.5 so anywhere to 8.5 at the 2 hour mark would be normally considered ok. You could ask for a referal to see diabetic dietician/dsn who can work out a target range based on your particular needs. If choosing to do this, it would be extremely helpful to keep a food diary (then keep a seperate list of what 'works well' for you, foods that are your happy to 'occasionally have' or simply 'smaller portion' might work, alongside foods should perhaps 'avoid. You may require to buy some of your own test strips, depending on what was written with your initital prescription (if go above what gp has prescribed). keep those seperately if you choose to monitor at other times so costs can be kept down.

if based in scotland: https://mydiabetesmyway.scot.nhs.uk/know-more/
if based england/wales https://elearning.diabetesmyway.nhs.uk

Can see some results and targets on the above pages if signed up alongside some other infomation & resources which doesn't require a referal.

I got back from a theatre trip about an hour ago, and I was a bit hungry, so I knew that it was a good time to test, but I am just too tired. So I had a snack.

I need to get over this cough and cold, so I can get SOME sleep, and then I will start testing properly....

Does having a cough and a cold affect blood glucose levels? Does being really tired and stressed and ill affect blood glucose levels?

One of my problems is that the symptoms I am displaying can, seemingly, be one of several things. Maybe testing the glucose stuff will help to show if it is diabetes....

 

[Guineveretoo]

Appreciate the tag @grantg , I’ll try to help where appropriate.


Hi, @Guineveretoo

You seem to have a fair bit going on. By all means quote or tag me & ask direct questions.

The meter error message can or could frustratingly mean anything from a test strip error like improper insertion to the machine. Maybe Not enough blood. Or even the meter is too cold to perform the test?
Depends on the meter. What meter do you use?

The maculopathy (or “something”.) was picked up by a certain high street optician “I shoulda gone to” earlier? . (Over a decade back.) They contacted my GP, then I was referred to an ophthalmology department at the hospital.
Keeping a decent management of diabetes does help along with any treatment offered.
But I did find out that a short sharp shock pulling BG levels in line can sometimes be detrimental to eye health?
If you are to bring your HbA1c down… Do it slowly? (Decompression like a diver to avoid the “bends.”)

I got away with “it.” Till the point I took my T1 seriously..

Mine was picked up at the hospital in my annual DRSS test. The letter with the results said "diabetic maculopathy" which I had never heard of. The specialist explained to me when I saw her, several weeks later, that it is retinopathy. The macula is part of the retina.

No treatment has been offered at this stage - just to get my diabetes controlled/managed better and to return for monitoring after a few months. I felt it was the confirmation I needed that the diabetes was not as controlled as the GP kept telling me it was from the HBA1C (even though I see from people on here that my HBA1C is routinely higher than most people!) and was pleased to get the referral to the specialist team that I thought was going to happen.

But here I am, still on my own.

 

[Guineveretoo]

Initially, the meter told me that there wasn't enough blood, so I squeezed some more on to it, and then it said it was full, and did its count down, but came up with E 1. At which point, I just gave up and sought help.

Oh, and my finger was bruised and painful afterwards.

I really messed it up.

 

[grantg]

DSN stands for Diabetic Specialist Nurse.

Illnesses such as colds, flu, infections are just one of many things that can effect blood glucose levels (usually raised) Stress can also effect levels. I find if anxious/worrying can raise as well.

I was referred to diabetic dietician via DSN around 3rd time saw her and asked for it

What was your hba1c results the last two times had it done?

With regards to a meter telling you not enough blood you require to insert a new strip squeezing more top of a used strip will cause error that you received.

Wash hands in warm water helps to get blood flow more easily ensure dry. Warm fingers usually hurts less. side of fingers before which should also help, alongside ensuring to rotate both sides of fingers and fingers themselves used. The sides of fingers are less nippy)sore as not as much nerve endings there. Using a fresh sharp lancet should also help.

High levels for me resulted in tired and couldn't be bothered wanting to try sleep. .

Edit added: keeping well hydrated should help with cold. Around 6 to 8 glasses water a day (or sugar free drinks)

 

[Guineveretoo]

How do I get to see a DSN?

Am still in bed and trying to get more sleep - will check hba1c later.

Am drinking lots of water. My kidney suffers if not kept wet!

 

[grantg]

The diabetic team inititally saw, would of normally included DSN at least in my area for both type1/type2 alongside gestational (dont have personal knowledge outside that). Betwen 3-6 months for type1 appts (more frequent when inititally diagnosed). for type2 my mum was seen around every 6 months for several years then moved to yearly appointments she was still able to give them a call if had any questions, the last couple of years of her life (which can happen in some cases when overlapping conditions) seen by gastroenterolgist team for dietry needs. i see your original referal, community diabetic team, was rejected unsure of reasons or how long ago that was. You could request a rereferral for what took took its place via your gp or if any appts with other consultants can ask them to signpost you in the right direction. (eg annual review whoever spoke to you about hba1c or could ask someone that monitoring either your kidney/liver).

I've had a quick glance through posts to see if could see a rough location (healtboard your in) couldnt see which. If you search on your healthboards website. Usually it has a search function My healthboard is nhs highland their website I would insert "diabetes" into the search area which in turn would give a link simular to this page https://www.nhshighland.scot.nhs.uk...rvices-a-z/diabetes-specialist-team-contacts/ your healthboard should have simular contact details available. NB the nhshighland contacts page is purely for my own particular healthboard.

Hope you managed to get some sleep.


edited: added nb sentance.

 

[Pipp]

How do I get to see a DSN?

Am still in bed and trying to get more sleep - will check hba1c later.

Am drinking lots of water. My kidney suffers if not kept wet!

Some people with T2 diabetes don’t get to see a specialist diabetes team. Unless they also need to be treated with insulin.
In over 20 years since my T2 diagnosis I have only ever seen practice nurses and health care assistants at the GP surgery. Never even discussed the diagnosis with a doctor.

I think @grantg has had more intense investigations with specialist teams due to where he lives, but also mainly due to initial diagnosis that was not T2.

 

[grantg]

Some people with T2 diabetes don’t get to see a specialist diabetes team. Unless they also need to be treated with insulin.
In over 20 years since my T2 diagnosis I have only ever seen practice nurses and health care assistants at the GP surgery. Never even discussed the diagnosis with a doctor.

I think @grantg has had more intense investigations with specialist teams due to where he lives, but also mainly due to initial diagnosis that was not T2.

its a shame if that is the case due to location. postcode lottery should not be a thing regarding treatment/help and advice.

My late mum was t2 saw dsn fairly regular she was on insulin for many years, had saw the dsn several times at longer review periods 1-2 years before that point the time where started to require insulin (approx 15 years before required insulin). Diabetic Clinics in my area are spread across several different hospitals within 2 healtboards (one dsn goes between 2 locations). the area in which I live does not have a lab that can analyze bloods (exception fingerprick flash glucose at time taken) is likely main reason spread across two different healthboards. My uncle who was also diagnosed t2 fairly recently has already seen dsn (same 2 healthboards). would be awesome if universal approach could be taken across all healthboards giving everyone equal oppertunities preferably to a very high standard. my uncle is meeting diabetic dietician at the start of the new year he has seen dsn twice within the last few months of his diagnosis. I do have another friend in a different area (also is nhs scotland) which has diabetes t2 they see dsn once a year to discuss results at an annual review. Couple of other friends both t1 and t2 get seen only by greater glasgow and clyde health board that seems to be on a more adhoc basis that live near glasgow city centre between 6 months and 2 years. most t2's seem to have longer review periods. Little bit of useless info: my late mum t2 had the dsn that i was assigned. diabetic clinic when i go across to the mainland can be 1 of 3 dsn's (or if telephone) however only is ever the same dsn at the diabetes clinic at the 'local' hospital.

Your reply does make feel pretty lucky in the area i live in @Pipp despite requiring ferries/travel exceptionally hard at times. my 'local hospital' is more like a community hospital most things other than x-ray sent across the mainland for a&e.. no speclaist resident other than radiographer for xrays. Everything else covered by nurses and gps within the area taking turns to cover a&e which is one of the downsides. Positives outweigh the Negatives (for me).

 

[Pipp]

its a shame if that is the case due to location. postcode lottery should not be a thing regarding treatment/help and advice.

I have managed well enough without seeing a specialist team.
For some of us it is not really necessary, though those who do struggle to control T2 do get referrals.

In the area I live we are well served by all sorts of specialist teams including world class cancer, heart, burns, immunology, allergy, orthopaedic, maternity, neonatal, womens health, gastroenterology, eye hospital, maxillofacial, endocrinology, and more, all within a ten mile radius. It can sometimes be a longer than desired wait to see them.
The point I was making is that not all people with T2 will need to see a specialist diabetes nurse or team. As long as they are having the regular blood tests, eye screening, foot checks, and these are fine, for some there really is no need for specialist appointments. Not always a post code lottery. Certainly isn’t in my case.