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Newbie who is frightened and confused...

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Crumblebee

Crumblebee

Member
Relationship to Diabetes
Type 1.5 LADA
Hello newly diagnosed with type 2.
But I'm scared and confused.
My symptoms gradually appeared but then skyrocketed they are as follows extremely tired like I could fall asleep anywhere, unquenchable thirst, crazy peeing, hungry but then not hungry after a tiny amount of food, lost over 2 stone, dizziness, confusion, I've also had small pain come and go in my core abdomen low down, some spells of blurry vision.
The g.p said she did the 3 month blood test, and I scored 92, and apparently normal is 41. I haven't a clue what the numbers mean.
The dr said she was concerned that i have MODY or LADA, but with no ketones in urine the diabetes specialist said that I'm type 2.
I'm not an extremely overweight person I don't think…
I'm just confused with the diabetics specialist saying that the symptoms other than the tiredness, thirst and excessive urination are to do with diabetes but the other symptoms aren't.
(Consultation was over the phone as corona is happening )
I was immediately put on metformin which has helped with the thirst, urination and vision, but still have everything else,
I don't know when I'll get to see another consultant in regards to diabetes :(
Has anyone had similar and should I do anything specific?
I feel so lost.
 
Hi Crumblebee. I have said before that the word confused is seen all too often in this section of the forum so you are far from being the first to be confused after diagnosis and I am sure you will not be the last.

First off, your score of 92, which I take to be a HbA1c result from a blood test, is high and should be ringing warning bells at your surgery. The diabetes specialist - was that a nurse at the practice or somebody at a diabetes clinic? If it was a diabetes specialist nurse (DSN) then one thing for sure is that the advice they give can be highly variable, some are better than others. If it was from a specialist clinic then maybe it will be a bit more authoritative but even so, a phone conversation will be limited in the information gathered.

Second off, read around the forum and get your self up to speed on diabetes in general and T2 in particular. It is easily manageable but you have to manage it yourself and you are better able to do that, with the help of the pros, if you have a bit of an understanding what it is all about.

Two specific to think about:

There is no doubt about it that weight and diabetes are related. Did you lose the 2 stone deliberately or did it come out of the blue? Where is your weight now?

Diet. Diabetes, in simple terms, is the inability of the body to deal with carbohydrates in food. Carbohydrate turns to glucose, the glucose finishes up in the blood and you have diabetes if your system cannot keep that under control. Controlling carbohydrate intake is the thing that for many, controls blood glucose.

Finally for now, don't be frightened. Get your self informed - it will take a little time - and work out a plan to suit you. Another thing for sure is there no sure-fire plan that will suit everybody, but that there is a plan which will work for you.
 
Hello @Crumblebee.
It's good that you have joined the forum and as you can see from @Docb s reply there is a great deal of help and support here.
Being confused and anxious when first diagnosed happened to many people, including me.
Please try to stay positive as there are many good solutions, as many people here on the forum have found out

As Docb suggest start to read around the forum, and ask about anything that you would like to know more about.
The Learning Zone link at the top of this page is a great source of information, and if you have a look at
useful-links-for-people-new-to-diabetes there are links to many other relevant items.
 
Hi and welcome from me too.

I would be asking for a second opinion as regards the specialist you spoke to. It sounds to me that your GP is more clued up and you are likely LADA or Type 1. You have the 4 Ts of Type 1.... Tiredness, Thirst, Toilet and Thinner. Ask your GP to do GAD antibody and C-peptide tests as these should confirm if you are Type 1 or LADA. I don't think you are likely to be MODY ..... more likely straightforward Type 1 unless you were diagnosed some time ago and symptoms have only just got worse. LADA is a slow onset form of Type 1 which may initially appear to respond to Type 2 medication and of course dietary changes which probably in reality will have more of an effect.

In the meantime cut back on your carb intake.... that is not just sugar but all carbs including bread, rice, pasta potatoes breakfast cereals and even health options like porridge and fruit in all it's forms (fresh, dried and juiced). If you feel really thirsty, drink plenty of plain water to help flush the surplus glucose out through your kidneys.... don't be tempted to drink juice or milk or pop as that just adds extra glucose.

Do you have a BG meter? If not ask if your GP can provide you with one.... They may say no but it is worth asking. If not it is possible to self fund and they are relatively inexpensive to buy at approx. £15 for basic models. The SD Gluco Navii or the Spirit Healthcare Tee2 are the two most used on the forum by people who self fund as the test strips are by far the cheapest @£8 for a pot of 50 as oppose to twice or even 3x that for some other meters. You will go through a pot of test strips in about a week so worth buying a couple of extra pots at least if you buy a meter.

Good luck with getting a correct diagnosis as it sounds to me like you have classic Type 1 symptoms. If you start to feel really unwell, get yourself to A&E pronto but if you are able to get a BG meter and test you will have much better information to know what is happening. If you have a meter and your readings go up to the high 20s or into the 30s, go straight to hospital.
 
rebrascora said:
Good luck with getting a correct diagnosis as it sounds to me like you have classic Type 1 symptoms. If you start to feel really unwell, get yourself to A&E pronto but if you are able to get a BG meter and test you will have much better information to know what is happening. If you have a meter and your readings go up to the high 20s or into the 30s, go straight to hospital.
Click to expand...

It's worth mentioning that adults with Type 1 won't always have ketones. (I'm sure I saw a tweet about that (the inappropriateness of requiring ketones for a diagnosis of adult onset Type 1) recently but I can't see it now.)

I imagine children won't always, either, but it tends to develop more quickly in children than with adults, so once the child gets seen they're more likely to have ketones. (I should emphasise I'm not trying to diagnose anyone. Just that not having ketones doesn't mean you don't have Type 1.)
 
Hello @Crumblebee, I am a few weeks in from unexpected diagnosis and felt exactly like you at the beginning. I am still quite pannicky and confused- so much that I thought I knew is wrong, but must say that I have learnt more here than anywhere else, everyone is so very helpful and supportive, they don't mind answering questions, even ones that seem silly or probably obvious to others but not to me! I am so glad I joined. I am sure you will get the same support and I recommend you look at the links and things suggested, I did that.
 
I didn't have ketones either when I was diagnosed last year despite getting BG readings in the high 20s and an HbA1c of 116. They assumed I was Type 2 due to being a self confessed sugar addict and 55yrs of age, but there was a bit of a question mark as I had sudden onset symptoms.... literally went out for a meal one night and felt thirsty just as I was leaving the pub and spent the whole night drinking water and weeing it out and the next 2 weeks were not much better despite cutting right down on sugar consumption. After 2 weeks I was a walking zombie with 5-6 pit stops every night, so I contacted the GP and they did a blood test. I then started Metformin and added in Gliclazide and spent the next 5 weeks cutting carbs from my diet until I had no where to go and they started me on insulin. I didn't see the consultant for another month and didn't get tested for Type 1 until another month later.
 
I didn't have ketones when I was diagnosed and my sugars were 50. I had tests done for T1D and was told I had T1D I was diagnosed at 19.
 
The diabetic SPECIALIST said your other symptoms are not related but i know if i am running high bg levels as i get pain exactly where you described and so does a friend of mine, i do love how clued up these specialists actually are.
 
Let's run through the tests available to the experts in the hope that it helps.
There is a blood glucose tests, usually done on a single drop of blood. Says what the BG level was at the time when the test was done. Neasured in mmol/L in UK. Result should be in single figures, higher SUGGESTS diabetic. Over twenty is cause for concern, and most test meters do not return a numeric result much above 30.

WHO says that it is not possible to give a diagnosis on a single BG test.

Next there is the HbA1c which measures the amount of glucose that is stuck to the red blood cells. As these cells are renewed every three months or so this give a good indication of how the BG has been over that time. A single test can say that you are diabetic but not what type you are!

When the body makes insulin it produces C-peptide. If a test for C-peptide indicates a high level then you have type 2, Type 2 often produce more insulin than normal. A low level indicates type 1. As type 1 often produce insulin initially the interpritation of the result is not always simple.

In type 1 the body destroys the cells that produce insulin. When it does this it produces antibodies. A test to find these antibodies confirms type 1 if they are found.

It is often impossible to say type one or type two for certain without these last two tests.

When there is no insulin being made most cells in the body can not use glucose. Without glucose for energy they will die. In desperation they use fat for energy, but without insulin yhey can not use fat effectively. Using fat without insulin results in the production of toxic substances called keytones. A keytone test can be done with a figer prick. Keytones are only produced in the final stages of type 1, and indicates a serious condition.

It is a good idea to insist on knowing what tests are being done and to get an numerical result. As some backward countries such as the USA do not follow international standards it helps too if the units being used are stated.
 
Docb said:
Hi Crumblebee. I have said before that the word confused is seen all too often in this section of the forum so you are far from being the first to be confused after diagnosis and I am sure you will not be the last.

First off, your score of 92, which I take to be a HbA1c result from a blood test, is high and should be ringing warning bells at your surgery. The diabetes specialist - was that a nurse at the practice or somebody at a diabetes clinic? If it was a diabetes specialist nurse (DSN) then one thing for sure is that the advice they give can be highly variable, some are better than others. If it was from a specialist clinic then maybe it will be a bit more authoritative but even so, a phone conversation will be limited in the information gathered.

Second off, read around the forum and get your self up to speed on diabetes in general and T2 in particular. It is easily manageable but you have to manage it yourself and you are better able to do that, with the help of the pros, if you have a bit of an understanding what it is all about.

Two specific to think about:

There is no doubt about it that weight and diabetes are related. Did you lose the 2 stone deliberately or did it come out of the blue? Where is your weight now?

Diet. Diabetes, in simple terms, is the inability of the body to deal with carbohydrates in food. Carbohydrate turns to glucose, the glucose finishes up in the blood and you have diabetes if your system cannot keep that under control. Controlling carbohydrate intake is the thing that for many, controls blood glucose.

Finally for now, don't be frightened. Get your self informed - it will take a little time - and work out a plan to suit you. Another thing for sure is there no sure-fire plan that will suit everybody, but that there is a plan which will work for you.
Click to expand...
Docb said:
Hi Crumblebee. I have said before that the word confused is seen all too often in this section of the forum so you are far from being the first to be confused after diagnosis and I am sure you will not be the last.

First off, your score of 92, which I take to be a HbA1c result from a blood test, is high and should be ringing warning bells at your surgery. The diabetes specialist - was that a nurse at the practice or somebody at a diabetes clinic? If it was a diabetes specialist nurse (DSN) then one thing for sure is that the advice they give can be highly variable, some are better than others. If it was from a specialist clinic then maybe it will be a bit more authoritative but even so, a phone conversation will be limited in the information gathered.

Second off, read around the forum and get your self up to speed on diabetes in general and T2 in particular. It is easily manageable but you have to manage it yourself and you are better able to do that, with the help of the pros, if you have a bit of an understanding what it is all about.

Two specific to think about:

There is no doubt about it that weight and diabetes are related. Did you lose the 2 stone deliberately or did it come out of the blue? Where is your weight now?

Diet. Diabetes, in simple terms, is the inability of the body to deal with carbohydrates in food. Carbohydrate turns to glucose, the glucose finishes up in the blood and you have diabetes if your system cannot keep that under control. Controlling carbohydrate intake is the thing that for many, controls blood glucose.

Finally for now, don't be frightened. Get your self informed - it will take a little time - and work out a plan to suit you. Another thing for sure is there no sure-fire plan that will suit everybody, but that there is a plan which will work for you.
Click to expand...
Hi thanks for replying,
The phone appointment was with a dr specialist, as my gp was shocked with my results (she was extremely concerned and nice about things).
I've lost wieght without trying, but i don't know if that's maybe because of my weird hunger.
If you can't eat bread or cereals, fruits or dairy what can you eat, chicken and vegetables?
They sent me a booklet in the post that has diet information and it says not to eat red meat, and eat wholegrain stuff.
I can imagine that confusion does run rampant for people, I'd just turned 34 like couple of weeks ago and to be told that I'm diabetic isn't a great start to 34.
 
I was going to reply to each reply but i feel like that would take a long time.
Does anyone get soft tingles through your joints?
Like pins and needles but muffled in discomfort?

I just want to say thanks for all the advice I'll get a BG meter (I work in a pharmacy so can get one easy).
Hopefully i will no longer have this weak feelings and i can do stuff without needing to sleep for hours after.

*** hugs to all ***
 
Crumblebee said:
I was going to reply to each reply but i feel like that would take a long time.
Does anyone get soft tingles through your joints?
Like pins and needles but muffled in discomfort?

I just want to say thanks for all the advice I'll get a BG meter (I work in a pharmacy so can get one easy).
Hopefully i will no longer have this weak feelings and i can do stuff without needing to sleep for hours after.

*** hugs to all ***
Click to expand...
Just to aware you need to check the cost of test strips as many are expensive to self fund.
 
Yes, many reps will supply the meters to pharmacies and GP practices free because they make their money on the test strips which can be 2 or even 3x the cost of a pot of the cheapest test strips and they are not interchangeable, so you might be better buying a cheap meter for £15 and buying the test strips to go with it than getting a freebee meter and paying twice as much per pot of test strips.
 
Welcome to the forum @Crumblebee

Sorry to hear about your diagnosis, and about your confusion over your diagnosis.

Its good that your GP is aware of the other, rarer types of diabetes. Do keep a close eye on your symptoms though, and as others have said, talk to your GP about those other tests if your diabetes management doesn't seem to be responding as you might expect. Rapid onset of symptoms and weight loss (from a normal weight to begin with) do seem to raise question marks. But LADA and other types can be tricksy and dont always present in a textbook way.

Hope you can clarify your diabetes category - getting an accurate diagnosis makes appropriate treatment and access to therapy much easier.

Hope you begin to feel better really soon, and return to feeling more yourself.
 
Crumblebee said:
I was going to reply to each reply but i feel like that would take a long time.
Does anyone get soft tingles through your joints?
Like pins and needles but muffled in discomfort?

I just want to say thanks for all the advice I'll get a BG meter (I work in a pharmacy so can get one easy).
Hopefully i will no longer have this weak feelings and i can do stuff without needing to sleep for hours after.

*** hugs to all ***
Click to expand...
Just to reiterate, it’s not the cost of the meter itself that’s important but the cost of the test strips. Initially you’re likely to be getting through more than 50 strips in a week maybe so the costs quickly mount up. The SD navii one mentioned is popular precisely because the test strips are cheap as chips (which is something else you don’t want too many of with a diabetes diagnosis!).
 
@Crumblebee I’d say it sounds more like Type 1 too. Type 1 in adults can come on more slowly, and, contrary to popular belief, lots of people are diagnosed with Type 1 after the age of 30.

You’re describing some unpleasant symptoms and personally I’d be pursuing further medical input about your type.
 
Crumblebee said:
If you can't eat bread or cereals, fruits or dairy what can you eat, chicken and vegetables?
They sent me a booklet in the post that has diet information and it says not to eat red meat, and eat wholegrain stuff.
I can imagine that confusion does run rampant for people, I'd just turned 34 like couple of weeks ago and to be told that I'm diabetic isn't a great start to 34.
Click to expand...
Dairy is fine - full fat yoghurt, cheese - cream in your coffee, all good. You can have any meat fish, seafood, eggs, small amounts of frozen berries are good too. I eat them with cream a couple of times a week at the most though. i have salads and stirfries, roasted low carb veges and find I am not hungry and feel great.
Wholegrain is starch with fibre, and just shows the ignorance of those giving advice.
Don't worry about the future. As long as you can discover what you can eat, what you need to do to stay normal there is nothing to fear. You might be found to need medication - but many people live with that as an everyday normality.
 
If you do turn out to be Type 1, you’ll be able to eat a normal healthy diet, including pasta, bread, potatoes, etc, and just have to replace the insulin a Type 1 pancreas no longer makes with insulin injections.

Type 2s usually need to be much stricter with carbs as it’s a different condition.
 
Crumblebee said:
I'd just turned 34 like couple of weeks ago and to be told that I'm diabetic isn't a great start to 34.
Click to expand...

Just to mention in passing that I did a straw poll many years back to find out people’s ages at diagnosis. Lots diagnosed in adulthood as I’d suspected (official stats I have since found are that 50% of T1s are Dx as adults).

Some also gave details ‘initially diagnosed as T2 blah... but then reclassified as T1 in blah’.

From this relatively small sample (200ish) it seemed that the age of diagnosis most likely to then be reclassified from T2 to T1 was....

35.
 
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