Another Newbie

C

cloudkicker

New Member
Hello Everyone.
My brain is in complete over drive and need to get somethings off my chest and looking for some clarity to ease my anxiety.

Based on past experience I have zero trust in the medical profession in general, I have never felt they have wanted to look after me and just wanted to fob off or tick boxes. So come on here to speak to real people with real life experiences.

My head is full of what I feel like stupid questions. So I apologies for the long post.

I had a blood test 2 weeks ago (in relation to another pre-existing condition) and looking at my results on the nhs app my HBA1C is at 93.
This is my first test and I show no symptoms at all so I was shocked by the result.

I'm due a telephone consultation on Monday with my GP Pharmacist. I'm not sure what to expect.

I have no symptoms what so ever, will I be classed as diabetes or is it only after the 2nd test? I read NICE guidelines say there should be 2 weeks between results but going by how long I waited for my last blood test its going to be about 6 weeks between tests. Not sure if this will make a difference. I assume not?

Because the appointment is with the pharmacist I have a feeling they going to want to put me straight onto medication. Should they not wait until the after next test as I have no other symptoms?

Assuming the worst and already being overweight, I've decided this is the kick I need to completely change my lifestyle. I've decided to reduce all carbs (going keto no more than 20g of carbs per day) and adopt a better exercise regime. I've been doing this now for 2 weeks and I'm still motivated to keep this up and found tons of recipes and meal ideas I feel I can stick too.

Ideally and (at least initially) I don't want to take medication. I want to see if lifestyle changes alone can make a real difference. I want to see if I can prove to myself I change and improve my life. Am I being foolish and naive with this thought process? I feel my own efforts might not work as well as I hope but I feel I should at least try. I feel my lack of trust in medics is playing an influence.

My pre-existing condition is Polycystic Kidney Disease. My kidneys are still very healthy any my eGFR is still over 90 so no degeneration. Anyone else have PKD? Does having diabetes have an impact on PKD and visa versa?

Finally... I have got myself a blood glucose meter in preparation too - but I'm having a big problem training my brain to prick myself. I'm not afraid of needles but every time I go any try I simply can't do it. Anyone else had this trouble? How did you get round it?

Sorry again for the really long post and for all the questions as you can probably tell I'm a bit of ann overthinker. Any help or thoughts on any of the above appreciated.
 
Welcome to the forum
A diabetes diagnosis is indicated if your HbA1C is over 47mmol/mol and yours is 93 so pretty high and many would be getting symptoms, usually thirst, frequent loo visits, tiredness and vision problems and although a second test is often done that is more likely if the result is borderline. I think almost certainly you will be offered medication but which one would be preferred may depend on what would be suitable with your kidney issues. The kidneys have to do a lot of work in removing excess glucose from your system so good your eGFR is good.
You have obviously made a change to your diet but full scale keto is perhaps rather extreme as reducing blood glucose quickly can cause issues with your eyes and nerves so it is recommended that people reduce their carbs gradually over a few weeks and what would be considered a low carb regime is less than 130g per day but many do go lower.
This link is a program based on that and is one many find successful. https://lowcarbfreshwell.com/
As you have a monitor, make good use of it to check out your progress day to day or to find what meals you are able to tolerate by testing before you eat and after 2 hours, an increase of 2-3mmol/l is OK.
Finger pricking does not hurt, you do not see the small pointy bit and if you are unsure of how to use your monitor there are YouTube videos.
I started with an HbA1C of 50mmol/mol and started with 70g carbs per day following the principals in the link but I did get some issues with my eyes after a couple of months. I had not realised that could happen until I read on here.
 
@cloudkicker welcome to the forum. I had a reading of 69 on first test and asked for the test as I had symptoms. Peeing more than usual and slightly numb toes at night. Like you I have only seen the pharmacist not a doctor. I didn't join the forum until a few days before an appointment with a diabetic nurse. Maybe if I had seen a Doctor I would have been given the option to not immediately take medication. My second reading was 64. I started metformin two weeks later.
I cut out most carbs and ate lots of fish cheese eggs and veg. It was summer so had new potatoes in skins.
I have been impressed with the Freshwell site set up by two GP s there is a lot of good info and recipes.
From what I have read here I would suggest aiming to eat between 100 and 130 carbs. I lost almost a kg a week on this.
Some people say that a too drastic change can shock your body especially eye sight. I'm also not sure if an actual keto diet may affect your kidneys.
As to refusing medication of course you can. Metformin on a sliding scale is what is started. I then had an SGLT2 added which has knocked me off course as I'm told i need to keep my carbs up.
My exercise has mainly been short walks but I hope to add some strength training. I've recently had an eye operation and not sure when I will be able to swim.

My reading at end of September was 51.

Good luck
 
Hi and welcome.

These are all very valid thoughts and questions and definitely not stupid. I am pleased that you have bought a meter so hopefully if you can get around your psychological problem with using it, it will be a valuable tool, particularly if you want to try to manage things without medication and provides a safety net so that you can keep an eye on things between tests and get urgent help if levels go higher instead of coming down.

An HbA1c is certainly very high but many here started from higher. It is very reasonable for medical professionals to want to start you on medication straight away with a result that high. Technically you are right that if you have no symptoms then a second confirmatory test result over 47 would usually be required just in case there was some mix up at the lab or whatever. I was symptomatic and my first result was 114 and it increased to 116 a few weeks later during which time I had been on 2 types of oral meds and progressively low carb diet. It turned out I was Type 1 so I was never going to be able to manage it by diet alone no matter how keto I went. Sadly misdiagnoses are rather more common than they should be so I think it is always important to keep that possibility in the back of your mind, particularly if you decide to postpone or forego medication and that is where self testing is so important, because it enables you to see if what you are doing is working or things are deteriorating regardless of your lifestyle efforts.
Untreated Type 1 diabetes will ultimately be fatal and was fatal prior to the isolation of insulin just over 100years ago, although in general these days, it is caught and treated before it becomes fatal, but patients can become dangerously unwell quite quickly if not treated with insulin. Type 2 diabetes doesn't generally lead to that situation at least not in the early days, months and perhaps years after diagnosis, because many Type 2s are actually over producing insulin to overcome insulin resistance in the early stages. Your HbA1c being at the higher end of the scale suggests that there is a slight chance of you possibly being Type 1, or possibly having had undiagnosed Type 2 for a while. Is there any record of a previous normal HbA1c result on your medical records?

As regards changing your diet, it is best to make slow progressive changes rather than drop straight into keto as a sudden change to your Blood Glucose (BG) can put a lot of stress on delicate parts of your body where there are fine and vulnerable blood vessels, particularly the eyes and the kidneys, so it would be sensible to just reduce your carbs gradually. Dietary changes can be more powerful than most diabetes medications and indeed there are cases of Type 2 patients coming off insulin, which is the most powerful medication, after making appropriate dietary changes. The problem is that many within the NHS have no understanding of how powerful dietary changes can be and how helpful home testing can be in assessing the best dietary changes to make and sadly many people are not motivated to make dietary changes or are given inappropriate dietary advice and told not to home test.

I think if you want to hang fire on medication and see what you can manage to achieve through lifestyle/menu changes, then you need to be able to test. You are certainly not alone in having this difficulty in activating the lancing device but I don't think we have had anyone who has not overcome it. Do you have someone who can do it for you for the first few times? Start with the very lowest depth setting which will likely not even break the surface, so that you get used to using the device without there being any discomfort and then gradually increase the depth until you can massage a drop of blood out of your finger after pricking. Having warm hands and developing a good technique is key to successful finger pricking. Watch some You Tube videos on it to get ideas and improve your confidence. Prick the side of the pad rather than the middle as it is less sensitive but not too close to the nail where it will be more sensitive. Once you get over this initial hesitation you should be fine, so maybe getting a friend or family member to do it the first couple of times will get you over the stumbling block.

Remember that it is your body and you can decide whether to take any medication that is prescribed. Maybe consider accepting the medication so that you have it there to use if your dietary changes don't result in your levels coming down or worse they go up, rather than refuse it straight off, as we all know that getting another appointment with a nurse or GP can be challenging and they might be a bit stuffy if they tried to prescribe medication and you refused it in the first instance and then had to eat humble pie and ask for it later. If your levels improve as I strongly suspect they will if you are a straightforward Type 2, then you can tell them that you didn't take the medication after your next test result comes back improved, but better to have it available to you so that you can start taking it if things don't go to plan. With diabetes it is always a good idea to have a plan to keep yourself safe, so testing your levels and having that medication to hand would be what I consider good safety measures for you to try managing with just diet and exercise.

Hope that all makes sense. Sorry it is a bit "War and Peace". I have always struggled to be short and succinct. 🙄
 
Welcome to the forum @cloudkicker

No such thing as a ‘silly’ question here - and lots and lots of lived experience for you to delve into - literally centuries’ worth 🙂

It’s not exactly surprising that you have a bit of a mental block when it comes to stabbing a sharp metal implement into yourself. That seems like quite a sensible reaction to me! However, diabetes management can be made much easier by a good flow of information, so needs must.

I’d suggest you get an adjustable fingerpricking device (if the one supplied with your meter doesn’t have that function). Set it at its very shallowest depth which will barely graze the skin, much less puncture it, and go through the motions of setting and firing the device against your finger just to get used to the mechanics of it.

Choose the side of the fingertip (not the pad) as this has fewer nerve endings. And avoid being too close to the nail.

Then when you are ready set the pricker at a depth of 0.5 or 1 and see what happens. Work up from there until you can ‘milk’ the finger to get a droplet. For me this only happens about 3 or 4 on the dial, so at 1 you’ll most likely not break the skin. By keeping the depth of the pricker down you should find getting a sample is all but painless, and becomes pretty automatic in time 🙂

Good luck with it 🙂
 
Hi @cloudkicker, welcome to the forum. I can sympathise with your predicament as this is roughly where I was in mid September. Went to see the doctor about a different problem, had some checks and then asked to do the blood test. My first one came back as HbA1c of 92. Was told I would need a second test (just in case first was an error) and had it done about 10 days later and while the HbA1c was lower, it was still 86 (diagnosis T2D). At no point did I think I had any symptoms of diabetes.

I had a session with the diabetes nurse about a week or two after my second blood test and asked lots of questions that my wife and I had prepared beforehand, looked at some of the posts on this site and read the Learning zone materials and watched the videos. Found myself in a state of shock and said I wanted to avoid medication and do everything through lifestyle changes. She wanted to discuss this with her colleague before she committed to letting me follow this approach and a few days later she came back and said that as my levels were not falling fast enough (she did a Blood Glucose finger prick test during the visit which has a result of 12) they would prescribe me Metformin. However, as @rebrascora says its your body. And I decided not to take it but following my appointment I immediately cut my carbs to 130g or less per day, upped my exercise to 3-4 5K/week from 1-2 and started monitoring my BG. After about two weeks I was offered the chance of free Abbot Freestyle 2 sensor by the nurse and I explained that my readings were now down to 6.4 - 6.7 before meals and normally 8ish after meals. Explained I hadn't started the Metformin.

It is now November and the diet is still working, and before I got ill with Covid my BG levels were looking good. Starting to improve a little bit as I get over the Covid now and I am doing strength training to increase my muscle mass as I don't need to lose weight.

I have also been a bit more honest with myself and accepted that symptoms such as thirst, minor peropheral neuropathy in my feet and other small problems were actually symptomatic of my diabetes and not because I wasn't drinking enough, running too much, etc.

The diagnosis is not the end of things, it is just the start of a new phase of our life. With my wife's help I am still eating a low carb diet, having the odd low carb desert and enjoying things. I still need to reduce my work stress which is part of my problem and when I finally retire at the end of the year, I plan a much more relaxed lifestyle.

Good look to you and focus on the future and what you can do rather than looking back at the past at what you may have done/not done.

As for sticking yourself, do what I always do with needles - don't look. I put the device on my finger, turn away and press the button. Its thinking about it that hurts the most :D
 
Hello Cloudkicker. As well as the pharmacist, it might be worthwhile talking to your GP about your thoughts on diet and medication so that all the health professionals involved in your care can work with you to come up with a plan that works for you. Other pre-existing conditions could make it more difficult for you to have a low carb and exercise approach to managing diabetes but speak to your GP to explore your options. It may be that medication is needed soon as to counter the HBA1C of 93 but that does not necessarily mean that you have to remain on medication if your circumstances change. I found one of the ways to deal with pricking my finger is focus on something else like music in the background or watching some mindless programme so that the pain is not my primary focus and the process become routine. Good luck with the consultation. It may be a little terrifying and there are probably lots of what ifs going round your head but hopefully you will be able to make an informed choice and keep the power over your health in your hands.
 
Mine was 83 and the only symptom I had was blurred vision.
I never had a follow up test to confirm.
I cut carbs to < 50g a day and 3 months later was 36.
I was on a low dose of Metformin until the surgery stopped it!
 
I had all the symptoms of diabetes at diagnosis but was incorrectly diagnosed as type 2 at the doctors but ended up in hospital with dka and the consultant told my I was type 1 after tests and spent a week in hospital.
 
@cloudkicker I was diagnosed 8 years ago with HbA1c of 91 and told I was a very bad diabetic on that evidence. No second test to confirm.
I cut my carbs to under 50gm a day and was soon no longer diabetic, but I had dome Atkins before then and always tried to stay fairly low carb even though I was nattered to eat 'healthy' carbs all the time.
If you can bring yourself to start to test then you could see how lowering your carb intake gradually might work for you.
I did not suffer any damage as far as I can tell - but it is not predictable, and I only did it because I was so furious at being pushed to eat carbs for half a century despite it making me feel unwell.
I was at the top end of the normal range eating a low carb diet and seeing normal numbers for years so was classed as in remission.
The low calorie shakes diet I tried recently didn't work at all well - so I am back to what I was eating - two meals a day, carbs from veges and berries, both fresh and frozen. I will get some strips for my meter to check the after meal levels as I did in the first months.
 
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