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Confused and feeling meh!

C

Charmaine86

Member
Hello All, I just wanted to introduce myself as I have a feeling I may be putting the forum to good use in the future!!

A little bit about my situation and a little bit of a vent if that’s ok .

So, In 2021 I got covid in the March- didn’t feel great was out the game for 4 days and then back to normal so nothing out of the ordinary until June, I developed quite severe Psoriasis and had never had any skin conditions or any other health issues until then- I tried to self manage this by spending eye watering amounts of money on promising products that just did not help.

I finally got the courage to visit my GP for help as I was spending hours each night peeling and picking scales just to be able to go to work but would wake up in the morning for the scales to be back!

Anyway, I’m rambling but it’s all relevant I promise!! I was referred to Dermatology and tried different creams etc to which nothing worked and I was put onto Methotrexate which has worked wonders for my skin but really doesn’t agree with me as I just feel sick all the time with a bursting sore head so I was then set to start Adalumimab which requires a blood test to test for TB- it was a shock when this came back positive for latent TB however, I am currently in week 8 of my 12 week treatment and it’s had its ups and downs- mainly downs but I feel I’m in the home run and not long to go!!

Prior to me starting the antibiotics I had further blood tests and the results were again a shock that my HbA1C was 90and a fasting blood glucose level of 17.1.

Asymptomatic and attended my GP who was quite baffled to say the least. My BMI is 25 and I follow a fairly healthy diet most of the time and do regular exercise. She told me I would have to start Metformin 2 x per day and I was referred to the hospital.

My appointment with the consultant was last Wednesday where more bloods were taken which included an antibody test as she wasn’t certain I was type 2.

She increased the metformin to 4 per day and I just can’t tolerate it due to gastrointestinal issues- can’t be having explosive bowel issues and trying to work at the same time! I have since dropped back to 2 metformin with no improvement so have decided to stop them as they are making me ill.

Since starting the metformin 7 weeks ago I have not had a blood glucose level below 15 and the highest being in the 20’s.

I feel terrible all the time and I could sleep standing up.
Not heard anything back from the hospital and the consultant said she would call when results were back.

Anyone been through similar or have any words of wisdom?

Thanks for listening and sorry for the long too much info post.

Thanks ☺️
 
Youve already had the tests to confirm type so it’s just a waiting game for those to come back. Presume you didn’t have ketones or you’d have been started on insulin.

You shouldn’t just stop the prescribed dose of medication without speaking to someone though. Ask to switch to slow release metformin to get rid of the side effects.

It’s good your Bgs haven’t dropped fast, better to bring them down slowly to protect your eyes.
 
Charmaine86 said:
Forgot to mention I have lost about 7kg in the last 6 -8 weeks and not intentional
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Unexpected weight loss is a symptom of Type 1 diabetes. My advice is to phone your GP and be seen asap. Say how unwell you’re feeling and get them to test for ketones. I wouldn’t be waiting for the tests. Better to get seen now and be checked.
 
Hello and thank you for replying.

I have had ketones over the past 2 weeks most days from a trace to ++ on the piddle sticks.

The consultant mentioned starting insulin or wait and see what the blood results come back as and she also mentioned introducing Glicazide.

I am on the slow release already and always take it with food but the last week or so has just been horrendous.
 
I’d start the insulin personally @Charmaine86 Ketones aren’t good. Over ++ on the urine sticks is high. You’ll feel a lot better with lower sugars and no ketones. If you are Type 1, you’re at risk of DKA if you’re not on insulin.
 
Inka said:
Unexpected weight loss is a symptom of Type 1 diabetes. My advice is to phone your GP and be seen asap. Say how unwell you’re feeling and get them to test for ketones. I wouldn’t be waiting for the tests. Better to get seen now and be checked.
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Thanks for the reply
I spoke to my GP this morning and she pretty much said I will have to wait for the hospital getting back to me.

I also told the consultant last week how bad I was feeling and about the ketones but she decided to double the metformin until bloods are back.
 
Inka said:
I’d start the insulin personally @Charmaine86 Ketones aren’t good. Over ++ on the urine sticks is high. You’ll feel a lot better with lower sugars and no ketones. If you are Type 1, you’re at risk of DKA if you’re not on insulin.
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Thank you, I would have to be honest if that’s what the option was but she decided to wait for blood results which she said would be back in a few days but I’ve heard nothing yet and no way to contact her.
 
Inka said:
I’d start the insulin personally @Charmaine86 Ketones aren’t good. Over ++ on the urine sticks is high. You’ll feel a lot better with lower sugars and no ketones. If you are Type 1, you’re at risk of DKA if you’re not on insulin.
Click to expand...
Thank you, I just know I’m not well if that makes sense but feel like I’m hitting my head of a brick wall
 
Hi there, and a warm welcome to the forum @Charmaine86 <3 I’m really glad you’ve found your way here, though I’m sorry for everything you’ve been going through. That’s such a lot to deal with all at once, and your frustration and exhaustion are completely understandable. You’ve clearly been pushing through so much between the psoriasis, TB treatment, and now a difficult diabetes diagnosis - it’s no wonder you’re feeling wiped out.
Thank you for sharing your story so openly - it doesn’t sound like “too much info” at all and we always welcome a rant. Many people here will relate to the confusing early days of diagnosis and the challenges around getting clarity, especially when your symptoms and blood sugars don’t seem to match what’s expected. That's one thing that we always say - diabetes is very individual to each person. It’s good that your consultant is checking for antibodies, and I hope those results come through soon so you can get on a treatment plan that actually works for you. You absolutely shouldn’t have to feel this awful day-to-day.
Managing your health needs to be practical, not just theoretical, so stopping metformin intuitively might be the way to go, but please do consult your doctor about this as well.
Please feel free to keep sharing and asking questions - this forum is full of people who really do understand, and you’re not alone in any of this. I hope you get answers (and some relief) very soon. Hang in there - you’re doing brilliantly in tough circumstances. :star:
 
Charmaine86 said:
Thank you, I did try this yesterday with the switchboard and was told the number was engaged- they then gave me the number and it doesn’t even ring- just cuts you off
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Try asking for the Diabetes Specialist Nurses number. They usually have a phone line. You might have to leave a message and get a callback.
 
Ieva DUK said:
Hi there, and a warm welcome to the forum @Charmaine86 <3 I’m really glad you’ve found your way here, though I’m sorry for everything you’ve been going through. That’s such a lot to deal with all at once, and your frustration and exhaustion are completely understandable. You’ve clearly been pushing through so much between the psoriasis, TB treatment, and now a difficult diabetes diagnosis - it’s no wonder you’re feeling wiped out.
Thank you for sharing your story so openly - it doesn’t sound like “too much info” at all and we always welcome a rant. Many people here will relate to the confusing early days of diagnosis and the challenges around getting clarity, especially when your symptoms and blood sugars don’t seem to match what’s expected. That's one thing that we always say - diabetes is very individual to each person. It’s good that your consultant is checking for antibodies, and I hope those results come through soon so you can get on a treatment plan that actually works for you. You absolutely shouldn’t have to feel this awful day-to-day.
Managing your health needs to be practical, not just theoretical, so stopping metformin intuitively might be the way to go, but please do consult your doctor about this as well.
Please feel free to keep sharing and asking questions - this forum is full of people who really do understand, and you’re not alone in any of this. I hope you get answers (and some relief) very soon. Hang in there - you’re doing brilliantly in tough circumstances. :star:
Click to expand...
Thank you so much, I really appreciate the warm welcomes from everyone and I’m sure I will have lots more questions when things become clearer. I just don’t know what to make of it all as it’s been quite sudden from the high hba1c to starting the metformin to actually feeling really unwell everyday and in the last 3 weeks to be specific
 
Inka said:
Try asking for the Diabetes Specialist Nurses number. They usually have a phone line. You might have to leave a message and get a callback.
Click to expand...
Thanks Inka, I have only so far been seen by the practice nurse who started the Metformin, my GP and the consultant at the hospital- I don’t have any number to contact them on- should I google it and chance my arm? At the hospital last week, the consultant said if I need to start insulin I will be looked after by the DSN. I asked my GP this morning if she could try and chase things up or get in touch with them but she said basically I will have to wait until they get in touch with me!
 
Hi @Charmaine86 - my story is very similar with an initial bout of Psoriasis - this is the first part of my journey (sounds very similar):

Started after a routine blood test following another diagnosis (Psoriasis - another auto-immune condition) - given a glucometer and strips and told to test before and 2hrs after food (Up to 10 times a day - ouch!) - My HbA1c was only 49 but my eagle-eyed doctor had noticed that over the course of a couple of weeks (when I was being diagnosed/treated for Psoriasis) that the weight was falling off me (In the end I had lost 2 1/2 stone over the course of a month) so she effectively ruled out Type 2 and ordered an auto-antibody test - was put on Metformin in the mean time whilst waiting for the results (which did precisely nothing for me other than give me dreadful stomach problems which I won't elaborate on!)
It is the auto-antibody test that takes ages to come back which is a pain but hopefully they will get to the bottom of things soon - the rest of my diabetes journey is here:

mashedupmatt

Thread 'Diaversary - and a thank you'

I knew it was close so had a look on the NHS app and it is today!

1751966739280.jpeg
Not a significant milestone, I know, and not even close to many people on here but it has been quite a journey. I thought I'd share it as it may help others:

Started after a routine blood test following another diagnosis (Psoriasis - another auto-immune condition) - given a glucometer and strips and told to test before and 2hrs after food (Up to 10 times a day - ouch!) - My HbA1c was only 49 but my eagle-eyed doctor had noticed that over the course of a couple of weeks (when I was being diagnosed/treated for...
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Charmaine86 said:
Thanks for the reply
I spoke to my GP this morning and she pretty much said I will have to wait for the hospital getting back to me.

I also told the consultant last week how bad I was feeling and about the ketones but she decided to double the metformin until bloods are back.
Click to expand...
I was in a in a similar situation to you. Asymptomatic, healthy BMI and diet and very active. Started feeling very ill after recovering from covid. Blood test came back with Hbac1 of 15 and high ketones. I had also been losing weight. However I was never put on oral meds, immediately put on insulin which brought the blood sugar under control and a low carb diet 60g. Diagnosed as D2. And yes I felt dreadful until I got my blood sugars down. Luckily my practice has specialist diabetes nurses, so immediate decisions and treatment.
 
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