New and confused

[Smiles]

Hi. Ive been ill for a couple of yrs Repeatedly having UTIs pain in my kidneys. Leg cramps ,itchy feet, swelling hands headaches, thirst and night sweats. Been to doctors more times than i care to think about. Finally they tested for diabetes at beginning of December. After arguing with the receptionist as she wanted me to wait till end of jan for my results i saw the doctor 3 weeks ago and apparently i have diabetes. He hasnt a clue which one as im apparently to old to have type 1 (48) but i dont fit type 2 im underweight. Hes given me metformin x3 a day and told me to see the diabetes nurse end of January . My hba1c was 76 and i bought a meter and the lowest its been is 8.9mmol/L and the highest its been is 12.9. Ive cut out carbs and sugar but without any advice from my doctor i dont know if i need to do anything else.
Anyway hi and thanks for reading.

 

[Deleted member 25429]

Hi. Ive been ill for a couple of yrs Repeatedly having UTIs pain in my kidneys. Leg cramps ,itchy feet, swelling hands headaches, thirst and night sweats. Been to doctors more times than i care to think about. Finally they tested for diabetes at beginning of December. After arguing with the receptionist as she wanted me to wait till end of jan for my results i saw the doctor 3 weeks ago and apparently i have diabetes. He hasnt a clue which one as im apparently to old to have type 1 (48) but i dont fit type 2 im underweight. Hes given me metformin x3 a day and told me to see the diabetes nurse end of January . My hba1c was 76 and i bought a meter and the lowest its been is 8.9mmol/L and the highest its been is 12.9. Ive cut out carbs and sugar but without any advice from my doctor i dont know if i need to do anything else.
Anyway hi and thanks for reading.

I was diagnosed with type 1 at the age of 52 and I know there are others on the forum diagnosed in 40s and 50s so his comment isn’t valid . I’d push for more tests, they can check for the antibodies that could be present if you are type 1 .

 

[SueEK]

Hi and welcome to the forum. Firstly don’t know what your doctor is on but you are never too old to have type 1, it can happen at any time and is usually referred to as LADA and just because you are underweight also doesn’t mean you aren’t type 2. I am slim, was tested for type 1 but am definitely type 2. Glad to hear you’ve already taken steps to reduce your levels by cutting your carbs and a great idea to have a meter. It is always best to test just before food and then 2 hours after then that will give a good idea of what foods you can and cannot tolerate. Everyone tolerates things differently so there is not an exact formula for reducing levels. However things like bread, pasta, rice and potatoes plus obvious sugars in cakes biscuits etc need to be reduced as much as you can. There are other diets that you could follow but most of us do low carb as it has good results. Having said that because you say you are underweight you will need to ensure that you don’t start losing weight as low carb is also a way of losing weight. I had to increase my carb intake as I was losing too much. As long as your cholesterol levels are not high then you can increase your fat intake as this and protein is where we get our energy from once we reduce carbs.
One other point, try to take your Metformin with or after your main meal or you will probably end up with an upset tummy.
Have a good look around the site and come back to us with any questions you have as we are all happy to help.

 

[Smiles]

Thankyou for that . Ive been searching round the internet to try and find people in my age group that have been diagnosed with type1 so i can go back to him. He didn't seem to have a clue and couldn't offer me any advice other than to stop smoking.

 

[Ljc]

Hello @Smiles . Welcome to the forum . Firstly don’t panic, Diabetes of ant type is a manageable condition.
You have reduced carbohydrates which is great .
Your self testing , perfect 🙂. I will give you a few links to some great info, one explained how we test to see how the various carbohydrates affect us as we all react differently, this way you will not be cutting out foods that you tolerate well .

https://forum.diabetes.org.uk/boards/threads/maggie-daveys-letter-to-newly-diagnosed-type-2s.61307/

http://loraldiabetes.blogspot.com/2006/10/test-review-adjust.html
Many of us do this a little differently, we test directly before eating then two hours later as it’s the difference between the two that is important, ie
If you only tested afterwards and the results was say 11.9 you would naturally think that meal was a no no but if you had tested befor as well and you were say 10.7 , that meal was actually fine it was just your starting level was too high.

O , that doc was wrong T1 can come on at any age sadly GPs and practice nurses don’t normally get very much training in diabetes.

Ask as many questions you need to about diabetes, we will do our best to help

 

[Eddy Edson]

Thankyou for that . Ive been searching round the internet to try and find people in my age group that have been diagnosed with type1 so i can go back to him. He didn't seem to have a clue and couldn't offer me any advice other than to stop smoking.

Stopping smoking is good advice but you probably didn't need him to tell you that 🙂

For diabetes, I'd say find a doctor who knows what they're talking about, if you can - this guy evidently doesn't.

 

[Ljc]

Here is a link to the info
https://www.nhs.uk/conditions/type-1-diabetes/about-type-1-diabetes/

Why do you think you may have T1 or the slow onset version LADA latent auto immune diabetes in adults

 

[Smiles]

Thankyou so much. Gotta say ive been like a fish out of water. I was thinking of changing doctors before this and now im definitely changing .
So far everything ive done is because of this site and forum and ill carry on reading and changing things. Ive been doing bloods before and 2hrs after eating and keeping records so hopefully when i see the diabetic nurse it will be helpful.
Again thanks guys i dont feel alone anymore.

 

[trophywench]

Sorry Sue - if you happen to be 60 and are diagnosed with Type 1, it's always Type 1. LADA is a different type of diabetes, as is MODY. Then of course there are different Type 3 sorts, depending on whether it's eg steroid induced, or following cancer of the pancreas or whatever has caused it to malfunction. GPs usually don't know diddly about Type 3 either.

LADA usually presents in 'middle age' and often behaves like Type 2 for starters, even responds to T2 drugs for a while. But then at some stage, stops responding to that treatment whatever so the only thing that works is insulin exactly as Type 1 always does. The only way to discover which is which is to determine how much insulin the person's body is able to produce - which the C-Reactive Protein test determines. The body only produces GAD Antibodies for a short while after initial presentation.

@Smiles - there are 2 tests which help sort out which is which - neither of which are done as a matter of course - tests for GAD Antibodies and for C-Reactive Protein.

 

[Smiles]

Hi Ljc .i don't know which i have the doctor just said i definitely have diabetes but that i dont fit either type1 or type2 and he left it at that and sent me away with metformin.

 

[SueEK]

Sorry Sue - if you happen to be 60 and are diagnosed with Type 1, it's always Type 1. LADA is a different type of diabetes, as is MODY. Then of course there are different Type 3 sorts, depending on whether it's eg steroid induced, or following cancer of the pancreas or whatever has caused it to malfunction. GPs usually don't know diddly about Type 3 either.

LADA usually presents in 'middle age' and often behaves like Type 2 for starters, even responds to T2 drugs for a while. But then at some stage, stops responding to that treatment whatever so the only thing that works is insulin exactly as Type 1 always does. The only way to discover which is which is to determine how much insulin the person's body is able to produce - which the C-Reactive Protein test determines. The body only produces GAD Antibodies for a short while after initial presentation.

@Smiles - there are 2 tests which help sort out which is which - neither of which are done as a matter of course - tests for GAD Antibodies and for C-Reactive Protein.

So confusing, I was tested as I was atypical for T2 and they said I could be LADA so had GAD test etc but it showed I was T2, you certainly never stop learning.

 

[trophywench]

Ah well - why do they call local doctors GPs ? - because they are only expected and supposed to have general knowledge about all and every disease/condition/syndrome known to man. Not even supposed to be Expert with any of em - so I don't believe anyone should criticise em when they obviously aren't.

 

[Eddy Edson]

Ah well - why do they call local doctors GPs ? - because they are only expected and supposed to have general knowledge about all and every disease/condition/syndrome known to man. Not even supposed to be Expert with any of em - so I don't believe anyone should criticise em when they obviously aren't.

It's a fair point. On the other hand, it should be easy enough for them to just quickly RT-easily-accessible-FM to make sure they know what they're talking about.

 

[rebrascora]

@Smiles

Rather than change your doctor which will take time, ask for a referral to a specialist consultant, who should authorise further tests as described by others above, to get to the bottom of your diagnosis. The GP clearly does not have enough knowledge (which is very common so changing GP may not help) and if you are Type 1 or a variation of it, then without proper treatment (insulin) you could land in hospital sooner or later.... be that weeks months or years down the line.
I am another Type 1 who was initially diagnosed last year at the age of 55 and assumed to be Type 2 but with a question mark. I spent 6 weeks on a strict diet taking Metformin and Gliclazide before they made the decision that I needed insulin and another 2 months before I got Type 1 testing, but I was referred to a consultant during that time.
As @SueEK mentions, if you are eating low carb and do not need to lose weight then it might be wise to increase your fat intake to provide an alternative source of calories. Low carb, higher fat eating is contrary to everything we have been taught over the course of our lifetime but there is a growing wave of scientific minds who now believe that the research behind the low fat "healthy eating" government advice of the past 50+years was flawed and that fat does not make you fat or increase your risks of Cardio Vascular Disease. Fat also keeps you fuller for longer because it takes much more time for the body to break down, so it holds your BG steadier and you are less likely to overeat.

Anyway, I hope you get to the bottom of your diagnosis and get the appropriate treatment, but my advice would be to push for a specialist consultant referral rather than change GP.

 

[SB2015]

Hi @Smiles and welcome to the forum, from a T1 diagnosed at the age of 53.
I was fortunate that my GP picked it up correctly (I lost 1 1/2 Stone in a week and didn’t have a lot to lose)

If your strategies and the meds are not working you could go back to GP with evidence, and also explain that there is no age limit to diagnosis of T1. Then ask for a blood test to check for GAD antibodies, and c peptide test. This will enable them to identify which type you are. If things are not working don’t leave it.

 

[Ljc]

Hi Ljc .i don't know which i have the doctor just said i definitely have diabetes but that i dont fit either type1 or type2 and he left it at that and sent me away with metformin.

Your Gp has obviously swallowed all the misinformation hook line and sinker about T2 , Imo that’s understandable as there is so much misinformation going around out there.

We come in all shapes ,sizes and levels of fitness, some athletes have developed it. Their can also be a genetic link. Imo T2 is far more complicated than believed atm, by that I mean their are a range of causes that can lead to it.

 

[Jha19]

I'm in the too old to be 'obviously' T1 and too young/fit for an obvious T2 diagnosis category too.
Thankfully due to my a1c level the GP surgery sought advice from the hospital team immediately (who then made sure I got ketones tested that day!). I'm getting the best care and they are running all the tests (now they actually have some blood to test), rather than muddling through with a GP...

 

[stephknits]

Type 1 diagnosed at 43, wrongly diagnosed type2 cos of age at 42. There are lots of us. I had high hba1c and normal weight. Diagnosed type 2 cos over 40. Gave up as many carbs as possible and spent 9 months steadily loosing more weight til ended up in a&e with high ketones. Good luck with sorting out your diagnosis and welcome!

 

[Felinia]

Lots of good advice here but so far nobody has mentioned you are entitled to loads of tests and a training course as a diabetic. Suggest you also follow the Training part of this website which will give you loads of information, tell you what you should be tested for, and push HARD for another HbA1c within 3 months of your last one. Unfortunately sometimes you have to stand up to the Rottweilers when you have a genuine medical condition. You need to know whether the Metformin is working and testing is the way to find out. If it and the changed eating plan is not, then you really will need more tests to get a definitive diagnosis, whatever type of diabetes you have. Then push HARD for the appropriate training course. I'm disgusted that your GP hasn't ordered a full investigation - sending you away with "I don't know" and no plan to do anything about it is not acceptable.

 

[everydayupsanddowns]

Looks like you’ve had some great information already @Smiles - just wanted to add another ‘welcome’.

Hope you are able to get a referral to some more knowledgeable specialist support and get whatever checks are felt necessary to confirm your diabetes type. Getting accurately classified is very important IMO as it can affect the care you need going forward.