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.