Type 1 and 0 support

[Andrew04]

Hi everyone,

Hope everyone is well and staying safe.
I have been diagnosed with Type 1 diabetes this April and ever since I embarked on a medical rollercoaster. Firstly, since I was the first one in the family to ever receive this diagnosis I had no idea what to expect. I was given an initial dosage of basal insulin and humalog for before meals and went home hoping to grasp everything. For three months I called the diabetic nurses team weekly because I had daily hypos. I was unable to do anything: walk, do simple housework, run errands, work etc without my sugars dropping to <4. They reduced my insulin throughout the process but my situation got worse. I started losing a lot of my hair, lost even more weight, got acne which I never had, ate to keep up with my insulin, had heard palpitations and dizziness, persistent stomach ache. I told everything to the nurses and they told me 1) that they informed the doctor about it and it’s normal 2) that if I am that sick to contact the ambulance service instead. I was blown away by their rudeness and after their last advice to inject min basal insulin I stopped calling them. I had no way to get in touch with the doctor so I waited out until my appointment with her on September. When we did talk she had no idea about all these symptoms and I also informed her that my situation got worse and that now I had symptoms of a hypo from underneath a reading of 7. She called me into the hospital for hormonal blood tests, advised me to cut out the insulin completely but when the results came back everything seemed normal. Initially she mentioned referring me to another hospital to do further tests even saying that she does not knkw if I truly have diabetes only for her to change her mind later on and blame anxiety for all this mess. I do believe I was given the wrong dosage of insulin from the very beginning and that they didn’t properly examine me or listen to my concerns. I would need some advice and much appreciate any ideas. I was thinking of changing my diabetes team or ask for a second opinion however I am afraid I will be discredited from the very beginning if seen by another doctor given her correspondence. Also I don’t know the steps for this. Any ideas? Did this happen to anyone? Kind regards, Andrew

 

[trophywench]

So how are your day to day BG readings on your meter Andrew? What blood or other tests have they actually done since seeing the doc?

 

[Inka]

Hi @Andrew04 How are your blood sugars now? How high do they go? How low?

Are you carb counting and adjusting your insulin to suit the amount of carbs you’re about to eat?

I’ve read about hair loss after diagnosis, but your other symptoms could be a long ‘honeymoon’ period where you don’t need much insulin at all, or an intolerance of one or both of your insulins.

 

[Andrew04]

I don’t take any insulin at the moment. My sugar readings are between 9-11 in the morning dropping to 7 in the afternoon, raising after meal to 12-13 dropping to 6-7 before dinner. I carb count and don’t eat any sugar. I have maximum 90-100 carbs per day. Yes they mentioned it as a honeymoon period and tested me for the whole hormonal profile ( pituitary gland, c-peptide, cortisol etc. But as soon as I do any efforts like a 30 min walk my sugars drop really quickly from let’s say 11 to 5-6 which makes me feel unwell.

 

[Inka]

@Andrew04 That sounds similar to what I had. My consultant called it an atypical presentation of Type 1. If I didn’t take insulin my blood sugar after breakfast would spike to 13 but by lunch go down to below 4. My consultant explained it as too much insulin too late.

However, I only did occasional experiments without insulin because my blood sugar was clearly going high after eating and because my consultant said injected insulin would help my own beta cells last longer. That was true as I had a long honeymoon.

I only took 1 unit of basal when first diagnosed, rising to 2 units after some months. Apart from my own experiments, I took fast-acting insulin for my meals. I ate snacks between meals if necessary. In my opinion, it’s unwise to have blood sugars of 11 or so because those spikes are still potentially damaging your body. I’d rather take small amounts of insulin (get a half unit pen) and add extra carbs if needed. That way you can keep your blood sugar in range better and avoid damage.

I’d guess the unwell feeling you’re getting is in response to your spiking blood sugar that then drops once your own insulin spurts out an amount that’s too late and possibly too much, as my body did. It’s that fall that does it.

 

[everydayupsanddowns]

Hello @Andrew04

Welcome to the forum. so sorry to hear what you have been going through.

Former forum admin @Northerner started as a classic T1, but hasn’t taken any basal insulin for a while now.

It sounds like you've been having some nasty hypos, and many members recognise the severity of symptoms that can accompany levels that are dropping fast. This can be exacerbated if Bg levels have been generally elevated, because the glucose ‘thermostat’ can get set artificially high.

If yoi’ve been losing your hair, have you had your thyroid function checked? Hypothyroid can contribute to hypoglycaemia. As can Addisons.

Hope you manage to make some headway

 

[Kaylz]

Unfortunately it's all trial and error with dosage so they can't really have the following statement thrown at them

I do believe I was given the wrong dosage of insulin from the very beginning and that they didn’t properly examine me or listen to my concerns

I was started on 8 units of basal for instance but needed to reduce it to 1 where it stayed for almost 2 years and now currently take 22, doses can need changing on quite a regular basis, no examination is going to reveal the insulin dose you need and to work it out it has to be done through BG finger pricks xx

 

[SB2015]

Sorry to hear her w difficult things are at present for you @Andrew04
I have no idea who was silly to call the muddle time at the start of a diagnosis the ‘Honeymoon Period’.it can confuse things a great deal, as our body gradually changes. For some that is a speedier process than others. As Mike has said @Northerner is still not needing basal insulin after many years.

Feeling unwell as your levels drop to the 5s is not surprising if your body has been used to high glucose for a while. This may well settle and you will come to be delighted with a level in the 5s, with hypos starting below 4. But it is a time of adjustment for you and your team as they work with you to get the right dose.

I still remember my surprise just after diagnosis when just a twenty minute walk into town would drop my levels into hypo land. I didn’t think of that as exercise but now know I have to take account of even small amounts of activity.

I hope that they get to the bottom of your other symptoms.

 

[Inka]

...doses can need changing on quite a regular basis, no examination is going to reveal the insulin dose you need

So true @Kaylz and I think that’s one of the hardest things to get your head round initially. With other medical issues, you’re normally given a dose of meds and that sorts things out or at least keeps things under control. But with Type 1 there’s nothing really like that. The sands are always shifting.

You really do have to become your own expert.

 

[Amity Island]

@Andrew04 That sounds similar to what I had. My consultant called it an atypical presentation of Type 1. If I didn’t take insulin my blood sugar after breakfast would spike to 13 but by lunch go down to below 4. My consultant explained it as too much insulin too late.

However, I only did occasional experiments without insulin because my blood sugar was clearly going high after eating and because my consultant said injected insulin would help my own beta cells last longer. That was true as I had a long honeymoon.

I only took 1 unit of basal when first diagnosed, rising to 2 units after some months. Apart from my own experiments, I took fast-acting insulin for my meals. I ate snacks between meals if necessary. In my opinion, it’s unwise to have blood sugars of 11 or so because those spikes are still potentially damaging your body. I’d rather take small amounts of insulin (get a half unit pen) and add extra carbs if needed. That way you can keep your blood sugar in range better and avoid damage.

I’d guess the unwell feeling you’re getting is in response to your spiking blood sugar that then drops once your own insulin spurts out an amount that’s too late and possibly too much, as my body did. It’s that fall that does it.

Very interesting that Inka!

 

[Inka]

Very interesting that Inka!

And more common than we’d think. My consultant knows of a number of others just in my area. I’m sure I read something about a study a while ago. I wonder whether some causes of Type 1 cause different onset speeds or whether it’s just to do with individual immune systems - or particularly stubborn beta cells that refuse to die!

 

[Andrew04]

@Andrew04 That sounds similar to what I had. My consultant called it an atypical presentation of Type 1. If I didn’t take insulin my blood sugar after breakfast would spike to 13 but by lunch go down to below 4. My consultant explained it as too much insulin too late.

However, I only did occasional experiments without insulin because my blood sugar was clearly going high after eating and because my consultant said injected insulin would help my own beta cells last longer. That was true as I had a long honeymoon.

I only took 1 unit of basal when first diagnosed, rising to 2 units after some months. Apart from my own experiments, I took fast-acting insulin for my meals. I ate snacks between meals if necessary. In my opinion, it’s unwise to have blood sugars of 11 or so because those spikes are still potentially damaging your body. I’d rather take small amounts of insulin (get a half unit pen) and add extra carbs if needed. That way you can keep your blood sugar in range better and avoid damage.

I’d guess the unwell feeling you’re getting is in response to your spiking blood sugar that then drops once your own insulin spurts out an amount that’s too late and possibly too much, as my body did. It’s that fall that does it.

Thank you so much! It’s refreshing to hear that I wasn’t the only one going through a slightly different t1 diagnosis. May I ask where did you get the insulin pen with 1/2 measures? Mine were all fixed

 

[Andrew04]

Hello @Andrew04

Welcome to the forum. so sorry to hear what you have been going through.

Former forum admin @Northerner started as a classic T1, but hasn’t taken any basal insulin for a while now.

It sounds like you've been having some nasty hypos, and many members recognise the severity of symptoms that can accompany levels that are dropping fast. This can be exacerbated if Bg levels have been generally elevated, because the glucose ‘thermostat’ can get set artificially high.

If yoi’ve been losing your hair, have you had your thyroid function checked? Hypothyroid can contribute to hypoglycaemia. As can Addisons.

Hope you manage to make some headway

Thank you so much for the response. They did but the results came back with normal ranges.

 

[Andrew04]

Unfortunately it's all trial and error with dosage so they can't really have the following statement thrown at them

I was started on 8 units of basal for instance but needed to reduce it to 1 where it stayed for almost 2 years and now currently take 22, doses can need changing on quite a regular basis, no examination is going to reveal the insulin dose you need and to work it out it has to be done through BG finger pricks xx

Thank you, I didn’t experiment with units of insulin tbh. I started with a basal of 24 and humalog after each meal 6 units but now I’m taking no insulin and my readings are normalish-ish. I don’t get readings bigger than 12.0 and eat to prevent a potential hypo of it drops under 6.0

 

[Andrew04]

Sorry to hear her w difficult things are at present for you @Andrew04
I have no idea who was silly to call the muddle time at the start of a diagnosis the ‘Honeymoon Period’.it can confuse things a great deal, as our body gradually changes. For some that is a speedier process than others. As Mike has said @Northerner is still not needing basal insulin after many years.

Feeling unwell as your levels drop to the 5s is not surprising if your body has been used to high glucose for a while. This may well settle and you will come to be delighted with a level in the 5s, with hypos starting below 4. But it is a time of adjustment for you and your team as they work with you to get the right dose.

I still remember my surprise just after diagnosis when just a twenty minute walk into town would drop my levels into hypo land. I didn’t think of that as exercise but now know I have to take account of even small amounts of activity.

I hope that they get to the bottom of your other symptoms.

Thank you so much. May I ask how do you manage to do day to day exercise/walking without having a hypo?

 

[SB2015]

When on Multiple Daily Injections (MDI) I found it was easier to do exercise straight after a meal, and reduce my Bolus insulin for that meal. For a full day of walking i needed to reduce my basal insulin first thing in the morning too. However I did it I always had my jelly babies in hand and there were times when we just had to stop.

It was my frustration with dealing with exercise that pushed me towards asking for a pump. This certainly makes it a lot easier as I can now more a lot more spontaneous as I am now able to reduce my basal insulin in an hourly basis.

 

[Inka]

Thank you so much! It’s refreshing to hear that I wasn’t the only one going through a slightly different t1 diagnosis. May I ask where did you get the insulin pen with 1/2 measures? Mine were all fixed

There are various half unit pens depending on what insulins you use. For Humalog it’s the HD Luxura Pen (HD standing for ‘half dose’). It’s a nice pen with a metal casing.

 

[SB2015]

Ps
All of this will get easier. You are in the very early stages after diagnosis.
The half unit pens made a big difference to me, especially in the early stages when my insulin needs were so low. The half unit enabled me to make finer adjustments.

 

[SB2015]

And more common than we’d think. My consultant knows of a number of others just in my area. I’m sure I read something about a study a while ago. I wonder whether some causes of Type 1 cause different onset speeds or whether it’s just to do with individual immune systems - or particularly stubborn beta cells that refuse to die!

Hi @Andrew04 as Inka has said there are different rates of onset, and for those of us diagnosed at an older age usually have a slower onset, so those Beta cells may well be hanging on there which can leave you without a need for some basal or Bolus. Exercise will still be an issue and those Jelly Babies or whatever you use for hypos will still need to be on hand. Levels coming down to below 6 is good but will probably feel a bit weird as you have been higher for a while.

 

[Andrew04]

When on Multiple Daily Injections (MDI) I found it was easier to do exercise straight after a meal, and reduce my Bolus insulin for that meal. For a full day of walking i needed to reduce my basal insulin first thing in the morning too. However I did it I always had my jelly babies in hand and there were times when we just had to stop.

It was my frustration with dealing with exercise that pushed me towards asking for a pump. This certainly makes it a lot easier as I can now more a lot more spontaneous as I am now able to reduce my basal insulin in an hourly basis.

Thank you for sharing. I don’t take any insulin at the moment and always carry jelly babies with me but I’ll remember your advise when I’ll have to get back to them.