Type 1

[JeremyJeremy]

Hello everyone, I'm new to this having been diagnosed a few months ago. Only recently did I find out my antibody test was positive so I'm type 1, I'm 42 years old.

My initial blood test showed 117 which was very high and blood sugars of 18-19.

I went to the doctors because I had pains in my feet that were very painful especially at night, numb toes and an aching feeling on my soles. Suffered for many years with this and finally went to the doctors. Seems like I have nerve damage from reading a few articles.

I'm very lost when it comes to everything and would appriecate some guidance or advice please. I haven't had my specialist referal yet.

I don't know what a hypo feels like. Obviously I can do my readings to see how low it is but I wanted to know what symptoms other people experience so I know what to expect or recognise.

Also what foods are going to be good for me. I've obviously now tried to cut out sweets, fizzy drinks etc but wondered if there were any foods that I should try and eat. I think of fruits to be healthy but am aware of natural sugars and don't know if I should avoid them or not.

Also a sensitive subject but erectile disfunction has been a problem. I'm led to believe that having diabetes doesn't help at all along with my age and wondered if people have sought medication privately or through the GP for this and what brand would suit a diabetic as there's so many out there.

Thank you for any response.

 

[JAT1]

Welcome to the forums. Your post is puzzling because Type 1s have to take insulin and you were diagnosed several months ago so it seems extremely rare to be taking oral meds for type 1 instead.

 

[JeremyJeremy]

Indeed. I'm as confused as you are. I was initially told by my doctor I was type 2. I was then placed onto Metformin and Glicazide tablets (1000mg and 80mg a day) since then my blood sugars have dropped to 4-7 from 18-19.

Antibody test came back positive and my doctor confirmed I was type 1.

I always thought if you were type 1 you injected and that was it. My doctor seems to think my body is still working on some level with the help of the tablets.

 

[In Response]

Hi @JeremyJeremy, welcome to the club.
A diagnosis is a shock for all of us.

I cannot comment on the problem with your feet. However, in response to your other questions, a hypo is best explained with this video from Diabetes UK (the charity has nothing to do with this site despite the very similar names).

Regarding diet, fizzy drinks, sweets, etc, Type 1 is NOT related to diet or lifestyle. Management of Type 1 diabetes is matching your insulin to the food you eat and a healthy diet for someone with Type 1 is the same as a healthy diet for someone without diabetes. There is no need to avoid natural sugars in fruit.

High BG can cause damage to small blood cells which include those which affect erectile disfunction. Lower BG can help but, as you have diabetes, it is worth discussing with your doctor as you should be entitled to medical assistance.

With regards to injecting insulin, Type 1 is an autoimmune condition, for unknown reasons, our body believes the cells that produce insulin are bad so kills them off. This does not happen instantly, it can happen over years during which time, our body will produce some insulin. Studies have shown the best way to protect these cells is to make sure they are not overstretched which is why it is common to start on small doses of injected insulin.

 

[EllieM]

Hi @JeremyJeremy and welcome to the forums.

I agree with the others that you should speak with your GP about your (possible) ED. The subject comes up on the forums occasionally and I believe there are treatments that can help, but without a medical opinion I wouldn't necessarily assume the issue is diabetes related.

As regards the insulin question, have you been referred to a hospital endocrinologist yet or is your treatment still being handled by your GP? Some new LADAs get kept on oral meds while their pancreases still cope, but in the long tem I would expect you to move onto insulin, and as a T1 you should be entitled to a referral to a hospital clinic.

I believe you should also be entitled to a cgm such as a libre or dexcom (not certain on that as you aren't on insulin yet).

 

[JeremyJeremy]

Thank you all for your replies. My doctor said he's referred me to a specialist but I haven't received an appointment yet. It feels like I've just been left to get on with it with no real guidance.

I guess I'll just have to wait for my appointment. I'll be raising all my concerns with them but wanted to try and sort bits out ASAP.

I'll have a look into the monitoring kits, they look good and seem to very reliable.

 

[EllieM]

Hopefully your GP has at least given you a glucometer? Far too many T1s get diagnosed via diabetic ketoacidosis, which I'm putting a link to below.

Diabetic ketoacidosis

Find out about diabetic ketoacidosis (DKA), including what the symptoms are, when to get medical help and how to prevent it.

www.nhs.uk

This is a risk if your body's insulin production becomes too low and your blood sugar goes up. Ideally your GP would have given you a glucometer which tests for ketones (you can also get urine testing strips from a chemist but they aren't as accurate).
High blood sugar plus high ketones is a medical emergency that needs a 111 call and a trip to A&E for insulin.

Having said that, hopefully this won't ever happen to you. (I've been T1 for 54 years and never had a DKA). But to be on the safe side, it's worth being aware of the symptoms.

 

[MommaE]

Thank you all for your replies. My doctor said he's referred me to a specialist but I haven't received an appointment yet. It feels like I've just been left to get on with it with no real guidance.

I guess I'll just have to wait for my appointment. I'll be raising all my concerns with them but wanted to try and sort bits out ASAP.

I'll have a look into the monitoring kits, they look good and seem to very reliable.

I would suggest making a note, either on paper or your phone, of questions and thoughts that you have between now and your appointment. You can then take it with you. There is so much to learn and question I find if I don’t have the written version with me when faced with a white coat ( even though I was an RN), I forget most of what I wanted to ask.

 

[JeremyJeremy]

I would suggest making a note, either on paper or your phone, of questions and thoughts that you have between now and your appointment. You can then take it with you. There is so much to learn and question I find if I don’t have the written version with me when faced with a white coat ( even though I was an RN), I forget most of what I wanted to ask.

I will do. Thank you

 

[JoeyGraf20]

I’ve found to be it a trial and error thing, I’ve had T1 four years now I think, diagnosed over Covid. Since then found my routine with good and drink as well as exercise (if you do this is one that caught me out originally) but I typically
No breakfast
Lunch is usually meat and veg and rice or meat and salad,
Dinner eggs on toast or yoghurt berries and granola or just whatever is cooked (lasagna, roast dinner etc)

Fizzy drinks, I nail the zero sugar energy drinks I must admit, so many out there you’ll do well to find something you don’t like

Once you get them sugars down you’ll be alright, just a bit of adapting and finding your rhythm with it

I also gym 5/6 times a week, cardio and weights

People on here are generally your best source of information having all gone through it at some stage but remember everyone’s life after and experiences after diagnosis is different so keep with it and try not to get too frustrated with it!
Life is long so make the best of it now

 

[Daibell]

Hi. For me the symptoms of a hypo are feeling 'spaced-out' and hot and sweaty; perhaps a bit shaky. Ref ED the GP can prescribe Viagra. Do ask for a cgm on prescription such as Libre 2. As a T1 you are entitled to that.


Mod edit to conform with forum ethos