Newbie with sooooo many questions ... brace yourself!

[ShazzyBey]

Good morning all - it may be good afternoon by the time I finish writing this post bear with me

2 weeks today I was given my Diabetes diagnosis.... to say you could have knocked me down with a feather would be an understatement! I believe myself to be relatively healthy in my food and exercise, far from perfect, but in the main, I am healthy. I questioned myself as to whether I was deluding myself in that belief, however, feedback from close friends, family and work colleagues all feel the same.

Over a period of around 6 months, I had started losing weight. I was also extremely fatigued, and have not been able to do my normal morning gym session (x4 per week as a norm). I put the weight loss down to not going gym, and maybe losing muscle weight. As it continued, I had a check in with the docs, back of my mind fearing the dreaded 'C' (dramatic much!) but expecting peri menopausal due to age (47).

Docs called me in as my HBCA1 (not sure if that is the correct label - I am still learning!) was at 97. A previous blood test had been 33. He did the finger prick blood test (not sure if this has a name) and said if it was over 11.5 it was diabetes.... it came up at 20! He gave me a prescription for Metaformin 500mg x1 per day, and said i will get an appt with a nurse/clinic.

I started the medication, reluctantly. I have not had any further appointments, or advice, as the nurse has been off sick 🙄 so that is where I am at. Still in disbelief, still in denial that it is due to my lifestyle, not sure what I should/should not be doing. Interested to hear how it will be monitored. Can I reverse it? Will I put the weight back on if reverse it? Sooooooo many unanswered questions.

On top of that, yesterday, I seen a Sky News article, suggesting that there is a covid and diabetes link - it states that people who have had diabetes are at increased risk of developing diabetes in the weeks following infection, and that the chances of diabetes was higher in the three months after a covid infection, but returned to normal after 23 weeks. link to article: https://news.sky.com/story/covid-an...gilance-for-a-period-after-infection-12655468

I am really interested in this article, as I find for me personally, it would be more realistic than because of lifestyle. However, not sure that the NHS nurse, will be experienced enough to answer questions on the above.

So that's me, and that is where I am at! told you it would be afternoon

 

[ShazzyBey]

As a side note!

• I did put on weight during lockdown one - that could be a cause?
• For a number of years - I have experienced what could be explained as hypos/hypers.... I would go shaky, and clammy and feel like I needed to eat sugar! I think that is when I last had the blood test which was at 33 so a normal reading and not showing diabetes
• I have suffered with unexplained (don't go swimming so not water related) persistent ear problems for around a year - could that be a link?

 

[Windy]

Hi ShazzyBey, welcome to the forum. Sorry to hear about your diagnosis. Type 2 can be caused by weight gain, you don't have to be particularly overweight to get it, there are some slim type 2 diabetics, as well as some less slim ones, like myself.
I don't have any medical training, but my understanding is that covid and other infections can trigger type 1 diabetes by making the immune system attack the cells in the pancreas that make insulin, I haven't heard anything about it causing type 2, that's caused by excess fat cells in the liver and pancreas (but like I say, I'm not medical).

I'm concerned that you say you were losing weight before diagnosis, as this wasn't my experience with type 2. Were you trying to lose weight or was it just happening anyway? Was the doctor confident that you were type 2? You've got an appointment with the nurse/clinic, make a list of any questions you may have, including asking if weight loss is typical for T2, and ask them.

Are you able to get a blood glucose monitor and keep an eye on your BG levels? I have a Gluco Navii which I test my fasting BG with in the mornings to see how it's going.
If the metformin doesn't make any difference to your BG, or if it keeps going up, or if you keep losing weight, please go back to the doctor and ask if they can test to see if they still think their initial diagnosis of T2 is correct.
Best wishes, Sarah

 

[ShazzyBey]

Hi Sarah amd thanks for the reply.

I don’t think the Dr actually said which type - I just presumed T2 after doing a bit of reading and being on the Metaformin tabs and not jabs?

For the first time in my entire life I was losing weight without dieting! In fact I had an insatiable appetite!

I have phoned the docs today - the nurse is still off sick - I have asked can I maybe speak to a doctor as aside from being told I have it - I really don’t know what I should be doing or not doing.

Thanks for the update on covid being linked to T1 and not T2.

x

 

[Leadinglights]

Hi Sarah amd thanks for the reply.

I don’t think the Dr actually said which type - I just presumed T2 after doing a bit of reading and being on the Metaformin tabs and not jabs?

For the first time in my entire life I was losing weight without dieting! In fact I had an insatiable appetite!

I have phoned the docs today - the nurse is still off sick - I have asked can I maybe speak to a doctor as aside from being told I have it - I really don’t know what I should be doing or not doing.

Thanks for the update on covid being linked to T1 and not T2.

x

Loss of weight without trying and the hunger and probably thirst can be a pointer for Type 1 or LADA rather than Type 2.
The HbA1C test does not distinguish but there are two test which would the c-peptide and GAD antibodies. The treatment needed would be different if you prove to be Type 1 or LADA.
If Type 2 then reducing carbohydrates will bring down blood glucose but if you don't want to lose more weight then increasing protein and healthy fats will help.
Having said that a correct diagnosis is important.

 

[Inka]

Over a period of around 6 months, I had started losing weight. I was also extremely fatigued…

@ShazzyBey Weight loss is a Type 1 symptom. I’d be asking for confirmation of your diabetes type. Far too many adults are assumed to be Type 2 when they’re actually Type 1. Contrary to popular belief, Type 1 can occur at any age.

If there’s any doubt, ask for the Type 1 antibodies test and the C Peptide. There are a few antibodies associated with Type 1 and they usually test for them all not just GAD.

 

[freesia]

@ShazzyBey i would definitely go back to the GP and ask for the tests.

I was originally diagnosed with T2 (ok i was overweight) and given Metformin. This worked for a short while and i lost some weight but then my levels started to rise, i felt ill and the weight just suddenly dropped off me (i lost around 5st altogether!). The GP kept trying additional meds but nothing worked until he sent me to a DSN who did the tests and diagnosed T1. GP originally told me i was T2 based on my age and the fact that i was overweight so obviously they hadn't done the tests to see which type.

I had also had a severe infection prior to the diagnosis (ear infection which caused seizures). Now i'm on insulin, i've put weight back on and feel better.

 

[Jago]

Defo seems worth doing the tests that might indicate whether you are a T1 or T2 - I am a T1 and lost weight over a couple of months or so prior to my diagnosis and a couple of weeks prior to Dday even walking up the stairs left me out of puff… I was thirsty all the time, craving anything with sugar and peeing like it was out of fashion.

One of the reasons the doctors were so convinced (prior to an antibody test which confirmed their diagnosis) that I was T1 was due to the rapid onset of my symptoms….

Yours seemed like a daily quick onset (but I’m not a doctor) - either way it is important to get the correct diagnosis- the treatment for the two types differs - in one case (T2) it is built around increasing your body’s sensitivity to its own insulin … in the other (T1) it’s about replacing the insulin your body stops producing…

Whatever happens - and whichever “T” you end up being, good luck - and welcome to the forum!

 

[everydayupsanddowns]

For the first time in my entire life I was losing weight without dieting! In fact I had an insatiable appetite!

Welcome to the forum @ShazzyBey

I am another who was spotting a few aspects of your diagnosis story that seemed to deserve a bit of a closer look. I’m sure it hasn’t helped that the diabetes nurse at the surgery has been off sick, but many of the forum regulars have a pretty good nose for newcomers who would benefit from having their diabetes classification confirmed. A switch between allocated ‘types’ happens more often than you might expect! Rapid onset, normal weight at diagnosis, and unintentional weight loss are all ticking boxes for me.

That insatiable-appetite-with-weight-loss is familiar to me from my diagnosis. My body was losing the ability to process food properly as my beta cells were being lost, so the energy from my food was remaining stuck in my blood stream as high BG, and meanwhile my body was screaming that it was starving!

Hopefully once your type of diabetes becomes clearer, an appropriate diabetes management routine, and insulin if you need it, will begin to fall into place. 🙂

 

[SB2015]

I don't have any medical training, but my understanding is that covid and other infections can trigger type 1 diabetes by making the immune system attack the cells in the pancreas that make insulin

I think the link with T1 and COVID may be more around the need for more insulin when ill.

Type 1 takes some to show up as it involves the destruction of the Beta cells which make the insulin by antibodies. People are often diagnosed at a time of high stress or illness as thes will put the remaining beta cells under additional stress due to the increased need for insulin. This will then tip the remaining cells over and they ’go on strike as they are being asked to do too much’ . This can then lead to Diabetic Ketoacidosis and diagnosis.

I know that at the start of COVID I got very fed up with the news saying how underlying conditions such as Diabetes meant we would be a lot more ill. Having been jabbed with vaccines when I got it it was like a mild cold but I felt tired for a long time.I know it is different for many.

I am yet another person encouraging you to get a check for T1 @ShazzyBey Your weight loss and other symptoms prompt this suggestion. If T1 the tablets that you have been given will be overworking the remaining beta cells whereas a switch to insulin can prolong their life.

Let us know how you get on.

 

[DeeM]

Hi Sarah amd thanks for the reply.

I don’t think the Dr actually said which type - I just presumed T2 after doing a bit of reading and being on the Metaformin tabs and not jabs?

For the first time in my entire life I was losing weight without dieting! In fact I had an insatiable appetite!

I have phoned the docs today - the nurse is still off sick - I have asked can I maybe speak to a doctor as aside from being told I have it - I really don’t know what I should be doing or not doing.

Thanks for the update on covid being linked to T1 and not T2.

x

Hi @ShazzyBey. I am another newbie and your experience sounds very similar to mine - when I first went to the GP (I was on holiday in Australia at the time) he assumed it was Type 2 due to my age, even though I didn’t really have the lifestyle factors and had suddenly lost a lot of weight without trying. He put me on a high dose of metformin with jardiance and very quickly I got ketoacidosis and had to go to hospital. Even then they thought it was more likely I was Type 2 and had just reacted to the medication - but the hospital had thankfully ran the antibody tests urgently and when they came back it showed I was Type 1 (or LADA). I agree with the others that it would be a good idea to ask for the antibody tests. My understanding is that they can take quite a long time (several months) to come back, under normal circumstances.

 

[Windy]

I think the link with T1 and COVID may be more around the need for more insulin when ill.

Thanks for that SB2015, I thought it was the immune system being a bit too aggressive after being triggered by a virus, and mistakenly attacking the beta cells, but I'm happy to be put straight on that.

If T1 the tablets that you have been given will be overworking the remaining beta cells whereas a switch to insulin can prolong their life

ShazzyBey's only on metformin, I believe that they inhibit the liver making glucose, rather than doing anything to the beta cells. As far as I know it's only the sulfonylureas (gliclazide) that overwork the beta cells, though there may be other drugs that do which I don't know about.

 

[SB2015]

ShazzyBey's only on metformin, I believe that they inhibit the liver making glucose, rather than doing anything to the beta cells. As far as I know it's only the sulfonylureas (gliclazide) that overwork the beta cells, though there may be other drugs that do which I don't know about

Thanks for that @Windy. That is the clearest explanation I have had of their roles. Ta.

 

[ShazzyBey]

Thank you all for your replies, they have all been very helpful.
I rang the docs on Friday and spoke to receptionist, nurse is still off sick and said she would put me on the waiting list. Explained I wasn’t happy with that given I don’t know what I am supposed to be doing and haven’t spoken to anyone since diagnosis. She said she will speak to Doc and call me back tomorrow - so hopefully I get to speak to Doc then x

 

[Leadinglights]

Thank you all for your replies, they have all been very helpful.
I rang the docs on Friday and spoke to receptionist, nurse is still off sick and said she would put me on the waiting list. Explained I wasn’t happy with that given I don’t know what I am supposed to be doing and haven’t spoken to anyone since diagnosis. She said she will speak to Doc and call me back tomorrow - so hopefully I get to speak to Doc then x

Can I suggest you make a list of questions you want to ask as it is easy to forget when on the end of a phone and can feel pressured time wise./

 

[Felinia]

Thank you all for your replies, they have all been very helpful.
I rang the docs on Friday and spoke to receptionist, nurse is still off sick and said she would put me on the waiting list. Explained I wasn’t happy with that given I don’t know what I am supposed to be doing and haven’t spoken to anyone since diagnosis. She said she will speak to Doc and call me back tomorrow - so hopefully I get to speak to Doc then x

If you don't get a call back and a quick appointment to see a real person, keep chasing. It's so easy to slip through the cracks with busy surgeries. And PLEASE ask for the two tests for Type 1- the c-peptide and GAD antibodies

 

[Windy]

Thank you all for your replies, they have all been very helpful.
I rang the docs on Friday and spoke to receptionist, nurse is still off sick and said she would put me on the waiting list. Explained I wasn’t happy with that given I don’t know what I am supposed to be doing and haven’t spoken to anyone since diagnosis. She said she will speak to Doc and call me back tomorrow - so hopefully I get to speak to Doc then x

Glad to hear that they're going to try and get someone to talk to you. I want you to highlight to the GP about the weight loss, how active you were with the gym before, and how tiredness stops you from doing it now, and (politely) don't let them fob you off without booking in the blood tests for T1. They're v busy in the NHS, you need to advocate for yourself. It's important that you get the right diagnosis so that you get the right treatment.
Best wishes and let us know how you're doing. Sarah

 

[shiffcam13]

Hi @ShazzyBey . Your story sounds similar to mine, active, go to the gym etc then weight loss, thirst and other symptoms. Was diagnosed T2 to start with however I felt the diagnosis didn’t make sense. Requested the antibody tests which were initially refused - however with my GP’s help persuading the hospital they eventually did the tests and yes you’ve guessed it, my diagnosis has now been changed to LADA T1. I would follow the advice of those who have already replied to your thread and try and get the antibody tests done ASAP. Good luck !

 

[EmmaL76]

Hi as soon as I read your post I just knew a barrage of you could be type 1 would follow it lol. The advise and recommendations you have been given are 100% correct. All I will add is that I recently went for some genetic testing at a specialist diabetic clinic to try and get to the bottom of my own unusual diagnosis, the lady I saw said there has indeed been an influx of new diabetics presenting as type 1 or 2 after covid who’s glycemia had returned to completey normal within 3 months. Sadly I’m not one of them lol

 

[Leadinglights]

Hi as soon as I read your post I just knew a barrage of you could be type 1 would follow it lol. The advise and recommendations you have been given are 100% correct. All I will add is that I recently went for some genetic testing at a specialist diabetic clinic to try and get to the bottom of my own unusual diagnosis, the lady I saw said there has indeed been an influx of new diabetics presenting as type 1 or 2 after covid who’s glycemia had returned to completey normal within 3 months. Sadly I’m not one of them lol

There does seem to be some evidence for transient hyperglycaemia after Covid infection. A few studies have been published.