Hello, I have not been here for a while. Somewhat fed up with what was happening, and more generally struggling for various reasons. But I have an update of sorts.
When the story last ended I had realized the only way to cope was to not care, as I was not getting any answers. But then several weeks ago I got a text from the good G.P. saying he had prescribed me B12 tablets and I needed to book a diabetic review, and to speak to a doctor afterwards.
So I asked the surgery to do that. And a week later I asked the surgery to do that. And then I contacted N.H.S. England, in accordance with the information on their web site, to make a complaint about them. Whilst waiting for a reply I then got a text message to say I had an appointment booked. I am quite sure the two events were unrelated, because I got a stock reply from the N.H.S. saying they could not take a complaint that is being handled by the surgery.
A bit odd, as I never said I had complained to the surgery. And I have never complained to the surgery. So I clarified this, only to be given the same stock reply. So last week I have forwarded all of that to my M.P. asking her to get the N.H.S. to address it.
Back at the surgery I attended the diabetic review, though I could not speak to a G.P. afterwards. There were not even any in attendance at that time. My feet still work properly, incidentally, though my blood pressure was a little high and I was told to come back next week for a retest. I was also referred to a telephone appointment with a doctor about the mental health part.
So on that call I asked about the B12 message that I was supposed to talk to a doctor about, but she did not know what it was about and booked a telephone consultation with the good G.P. The mental health stuff, incidentally, lead nowhere as expected. Though it made me make another complaint, this time to the local C.C.G. about a previous decision of theirs.
You could probably have skipped the above, as this is where it all becomes relevant. Although first I should say I tested my blood pressure at home before the retest and it was fine. Then at the surgery it was really bad. 150/110-ish bad. But I was told to test it again when I am home and they would see what that says. And that was good, 120/70-ish. I have had poorer readings at home too, so I is not the monitor. Very strange, but apparently I should just keep monitoring it.
So I spoke to the good G.P., apparently my B12 levels were always at the lower end of normal so it may be diet. Though after a month on the tablets he ordered a test of my levels to see I was able to metabolize the tablets or whether it is a problem. I have asked the surgery twice for an appointment to discuss them, but…
The thing about the good G.P. is that he is good at his job. He knows I do not like using the telephone, so wanted me to talk to him or the other G.P. I trust in person after the review and the surgery ignored his request when making the appointment. In briefly mentioning my difficulty with the surgery though I referred to trying to contact him after the confusing experience with the diabetes clinic.
He said he would check my results from the summer with a consultant, who thought I would need to add either take a GLP-1 agonist or a long-acting insulin. However as I was only ordered an HbA1c at the review they did not yet have the result from that to see how well the Dapagliflozin had worked.
Meanwhile, the day after that review I had a follow-up telephone appointment with the diabetes clinic. So not much could happen there either, so they said they would call back in two weeks when they had my latest HbA1c. Though I did tell both the nurse and the good G.P. that I was not liking the medication as I was constantly going to the toilet and thirsty. Both had the same reply, that that is how the medication works. The good G.P. giving a more detailed explanation of why those effects will all stop when mysteriously levels lower.
I have not really been going to the toilet more than I was with very high levels, just that where before I would desperate to go just to release an ounce, now it was pints. It is the thirst that is really bothering me though. I am sitting here with 24 2L bottles of (sugar-free) pop stocked up just because I go through it so quickly now.
Before I was averaging around 11–13 mmol/L in the morning and around 15 mmol/L in the evenings, though my HbA1c in summer was 9.3%, which surprised me how low it was.
Since taking Dapagliflozin I am 9 mmol/l in the morning and 10–11 mmol/L in the evening.
I got a text from the surgery saying I should contact them about my HbA1c results, which is standard and was expected. Though I am surprised not to receive one about my B12 levels, even when results are kay they sent a "no action required" message. But as I said, I have asked for an appointment and yet to receive one. Given Christmas nothing may happen until next year, meanwhile I completed the original B12 prescription so am not taking anything pending discussing the result.
But on Friday the diabetes nurse called back, and she had my latest HbA1c result. She did not, though, have the C-peptide result which lead to my referral to the clinic. Which actually was more annoying, because it means when the doctor ignored me for raising it as the reason I was referred to the clinic it was not because she felt it unimportant, but that she did not know or care. No wonder she initially suggested retaking Gliclazide even though it was ineffective.
After over two months of Dapagliflozin being added to Sitagaliptin and Metformin my HbA1c had fallen to 8.8%.
The nurse was surprised, and I was shocked. Given the change to my fasting readings I was expecting something like 7.8%. She agreed with the treatment mentioned by my G.P., however you need a B.M.I. over 30 to be prescribed a GLP-1, so that was not an option for me. Well, I suppose not unless I have a really good Christmas.
And that is not going to happen as mine was cancelled long ago. My sister works in a school and has two children, so being clinically extremely vulnerable I already decided it was not an ideal place for me to go. Then last week my sister and dad agreed he would not go either because my niece and nephew are both isolating due to school contacts. And now I am in tier four anyway so now cannot legally go anyway.
Not being allowed a GLP-1 agonist, and with a too-long wait for an in-person appointment, the nurse sent her recommendation to their head doctor. I had hoped he would want to discuss it with me, as the nurse said he may want to do before prescribing, but apparently he was happy with her recommendation. So I will start taking a long-acting insulin in the middle of January, as that is the first available in-person appointment with a nurse.
Not sure how I feel about that. Under the circumstances I would have rather had the GLP-1 just because it avoids having to worry about hypos. The one thing I did not like abut Gliclazide was the lack of control over the hypos. With insulin I would rather it was all or nothing, to at least have control. But instead I just keep taking the drug cocktail, having to hope the that-is-how-it-works side-effects of Dapagliflozin go away, with the added risk of random hypos, but also now having to deal with the D.V.L.A.'s requirements too.
But I guess that is the end of that story.
The B12 one is still outstanding, but I either responded to tablets so just need to supplement, or I did not and will need shots. Although I in hindsight I have wondered what the good G.P. meant when he said my levels were always low when I am not aware of them having been tested before. They were only were tested in summer to investigate a low red cell count. So I still wonder if Metformin could be the cause, as I am sure I have enough fortified foods in my diet, but ultimately it does not affect whatever the eventual solution will be.
