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I don’t know what to do

Mummybear3

Well-Known Member
Messages
72
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Some of you may know I’ve had a bit of a tough time recently managing my blood sugars, quick re cap.....was on metformin and diet (low carb) during the heat wave in March my blood sugars were crazy high and I ended up being admitted with a dka. The doctors doubled my metformin which made me poorly. So they changed it to gliclazide and metformin and that did not agree with me. They swapped the gliclazide for Sitagliptin (Januvia) and I feel like rubbish, Shaky, aching all over. Bunged up nose and headaches and to be honest bloods don’t seem to be lowering. I’m eating next to nothing because I feel sick or have no appetite and On average I’d say my blood sugars are 18 mmol. On waking they are usually around 12.5 and I have seen 29 in the late evening. I’m starting to think that I may now not be producing enough insulin. Because surely if I were I wouldn’t be this high all the time. I’d say my spikes have levelled a little but running this high all the time must be damaging me in other ways. I don’t know what to do. Is it time for insulin? Is there something else I can try before it? Does it take longer than I’m giving it to change my levels? I’m constantly thinking about every side effect, every food I eat, everything I drink. I would probably say I’m having a melt down and have hit a wall with it all. My doctor comes across as so relaxed about it which makes me question if I’m over reacting. But I just feel so sorry for myself like there’s no end to the way I feel. The medication I’m taking feels like I’m poisoning myself each time I take it. But I’m embarrassed because this is my third change in a short period of time. I don’t want her to think I’m a hypochondriac. I’m not, I just want to feel well again. I suppose writing this to people who share/understand the way diabetes can make you feel helps me and any advice or similar stories would give me a little boost. Thanks x
 
It doesn't sound like you are a hypochondriac! What it does sound like is that you are expecting changes too soon. This is a long game and it takes a few months for your body to adjust to new drugs etc.

Obsessing about point in time test results can be difficult because like it or not we all remember school and are conditioned to think a bad point in time number is a fail when it is just a point in time number that can be affected by lots of known and unknown factors.

You need to see what your HBa1C is doing as that is a much better normalised number which shows what is happening to your BGL over time. Unfortunately of course you cannot rush that and you have to wait, which is hard to do.

So in the interim my suggestion would be to get out of the house for an hour long walk every day. Not a marathon, and no need for athleisure wear or lycra, but it gets your legs moving blood around and however much insulin you have will work a lot harder getting the glucose into your cells. You also get to smell the fresh air and see the trees, which is amazing, and see what other humans are doing (mostly wasting their lives in front of TVs but you won't be!). Maybe keep a log of your food and numbers and exercise, for say 8 weeks, and you will start to see patterns emerging (and your doctor will thank you as it is contemporaneous data).
 
@Toby789 thankyou. Some wise words there. I think I’m going to make an effort to get out in the fresh air. I’m rattling round in the house too much lately. I think I’ve come to terms with the fact that all medications have side effects, it’s just hard to get your head round feeling poorly when ultimately it’s making you better
 
DKA is very uncommon for a type 2, it can happen especially with certain medications, just not as likely because a type 2 usually makes enough insulin to stop it. You are low carbing, your sugars are uncontrolled. Have you ever been tested for being a type 1? 35% of us are misdiagnosed still as a type 2 at first. That's because a LADA/type 1 still makes some insulin for a while and slowly stops. 50% of type 1's are over the age of 30 at diagnosis and usually need insulin within 3 years. But you can actually still produce some insulin for up to 8 years plus.

You'd want an antibody test. If it's positive you are a type 1. But a few type 1's test negative but still don't make insulin. The second test is a c-peptide test. That shows how much insulin you are still making. Low or low normal is a sign of type 1, high or high normal is a sign of type 2. Type 1's slowly stop making insulin, type 2's are insulin resistant and produce extra trying to compensate for not being able to utilize insulin well.

I was misdiagnosed and it was very frustrating, I believe because I wasn't obese but not skinny they automatically said I was type 2. Even though I asked if I could be a type 1 I was told no by my first endo without him even testing me. All the medications made me sick and didn't work that well, so luckily I was put on insulin. When I got a new endo they automatically tested me and I was finally diagnosed right. It turns out that's the way a lot of misdiagnosed type 1's end up being properly diagnosed.

So find out if the tests were done, and if they weren't you might consider asking for it to be done. It makes a difference on getting the proper treatment.
 
No worries at all - in my experience the school exam problem is one of the biggest hurdles DMs face. Everything in modern life is about numbers and we tend to elevate them to such an extent the pass/fail mentality takes over. Sure you cannot just ignore them, but we cannot make them the most important thing we ever look at either
 
Those are all very good points. GPs default to T2 as a diagnosis unless you are young and DKA. To be fair GPs are overworked and cannot be expert in everything. They are meant to refer you to a secondary line of treatment ie an endocrinologist. It is important to read up on wikipedia and then ask questions of your doctor (informed questions , not questions about quack cures like apple cider vinegar or "enzymes" available on the web as then the GP will get frustrated as the internet has empowered a lot of folly lately). Add symptoms to your log too. Doctors find contemporaneous data most helpful as they can show longer term patterns.
 
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Hi, I have had this conversation with my gp, and asked for those tests. I was quickly told that she couldn’t order them and I would need a referral to an endocrinologist. To which she followed up with but let’s not run before we can walk. So I have considered paying for them privately, the feeing of being over dramatic creeps in and I haven’t had them done. I’m due to have my hba1c again in October on my birthday
so will address it again when I have my follow up if needed. I can 99% say it will have risen again. It’s gone from 43-48-56-79 so far.......
 
Hi @Mummybear3

If you are seeing readings as high as 29, they are dangerously high and I would urge you to seek medical attention immediately when going that high and to push your GP for that referral.
 
And just to add. My practice doesn’t even have a diabetic nurse. The nurse I see for my annual reviews etc is just the general nurse
 
Goonergal said:
Hi @Mummybear3

If you are seeing readings as high as 29, they are dangerously high and I would urge you to seek medical attention immediately when going that high and to push your GP for that referral.
Click to expand...

I’ve said this to her and she actually asked me why I’m testing and did they provide me with a meter. I told her I was testing pre and post prandial to monitor what works for me in regards to carbs and diet and she said I shouldn’t be testing and should rely on the hba1c to see what’s happening. It’s really hard not to get worked up about it because I know my levels are high, but when speaking to my gp she doesn’t seem phased at all. Hence me feeling a little lost about it all. I don’t thing we’re singing from the same hymn sheet x
 

Is there another GP at the practice that might be more open to discussion? You really do need some answers.
 
Goonergal said:
Is there another GP at the practice that might be more open to discussion? You really do need some answers.
Click to expand...

There is yes, do you think with what I’ve explained on here I do have a reason to question another doctors pathway? I don’t want to be a difficult patient but I’ve been diagnosed for over a year now and it’s not really improving. (I do think I’ve had this for about 5/6 years though) it’s hard with phone consultations to feel listened and understood properly.
 

Yes I do. You’re worried, your own testing shows that your diabetes is not properly controlled. That is enough of a reason to ask for help and seek the support you need. It isn’t about being difficult it’s about trying to understand and manage your condition.
 
Once again I urge you to insist on a second opinion.

you have already been hospitalised with DKA, where, in your own words, your life was at risk (from a previous thread).

this time, I would suggest that you don’t wait as long before seeking capable professional care. You can ask for a referral to your local diabetes clinic in person, or via a phone appointment, or in writing. Or (and this is a worst case scenario), you can wait til your symptoms escalate and go to A&E, but all they will do is resolve the current crisis and return you home to your doctor’s care. That could turn into a recurring cycle.

I really feel for your situation, and I know how difficult you find it to make waves and stand up to your doctor, but the quicker you act now, the sooner you can be on the appropriate treatment regime, with better blood glucose control, and a much better quality of life and less anxiety.
 
That is vexing. I would suggest you get a referral to an endocrinologist asap. Once you are with him/her and in the system, you should be OK as the endocrinologist can order these tests. GPs should really only be managing very basic T2s after the T2 has seen an endocrinologist. All other types, and strange symptoms, need a specialist in my view.
 
I have accessed the patient app as my doctors are not seeing patients. I have been to the point and requested a referral to an endocrinologist and given my reasons. I don’t know how many times I have to have the same conversations with them to be honest. Maybe this time I will be referred. (They will prob be glad to see the back of me) moral support and knowing I’m not over reacting has helped me. They should be in touch today with their response. I can’t see why it’s such an issue. Unless it’s a financial benefit to them for me to be seen by the gps and not a specialist at a hospital. The mind boggles
 
Can you buy some urine testing ketone strips from your chemist? If you are a misdiagnosed T1/LADA (going into DKA after just a year of T2 is a massive red flag) you need to know before it happens again. Monitoring your sugars and your ketones would at least allow you to ring 111 with confidence and say (my levels are x do you need to get me an ambulance). I can't believe that the hospital sent you home without considering this possibility.
 
I have a meter that checks blood ketones too. I bought that after the stint in hospital. The hospital gave me insulin and brought me back down to a more acceptable level. I was due at the doctors a few days later so they said they would double my metformin and send my notes to the doctors . I have had very high levels for quite a while now. But luckily since my trip to A&E I haven’t had ketones since. Only a smidge....nothing to worry about. The hospital did say they felt I hadn’t been dealt with correctly via the gp but yeah. I did think that maybe I would at the very least be seen more frequently, but no. Every appointment I’ve had has been because I’ve booked it. X
 

Hi @Mummybear3 ,

I won't beat around the bush. High BGs not comming down with ketones. Ring 111 talk to an advisor, give them the numbers.
They will dispatch an ambulance if need be.
This NHS link will help you. With regards to BGs & ketones.. https://www.nhs.uk/conditions/diabetic-ketoacidosis/
 

I haven’t got ketones. Only high bgs. I’m keeping a close eye on it. When I said a smidge it’s 0.2 and that was the other day. More often than not I don’t have any trace at all. Believe me when I say I won’t let myself get in that position again. I learned the hard way x
 
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