HAS ANYONE ELSE EXPERIENCED THESE SYMPTOMS? I NEED YOUR HELP

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Whitney

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Type 1
Hi there, before I start with the symptoms I thought it would be beneficial to put a bit of background. I’m female, 22 and was diagnosed type 1 diabetic 4 years ago when I was 18 after going into ketoacidosis. I have the freestyle libre and Miao Miao, novorapid and tresiba. I have been to my diabetic team (who say it doesn’t sound like something diabetic related) so I tried my GP quite a few times over the four years and my problem has still not been figured out / fixed. I have had my general bloods tested, coeliac tested as well as my thyroid and all are apparently fine. These symptoms started when I was released from hospital 4 years ago after diagnosis and have gotten worse and more debilitating as times gone on.

My symptoms usually come on after eating food which is why I feel as though it’s diabetes , however sometimes when I don’t eat I still get these symptoms, they usually get worse throughout the day.

My symptoms last for hours and include: sore eyes that feel tired, as though they’re being forced shut (sometimes it’s so bad I have to have a few hours naps), they are visably tired looking (smaller/puffy), they feel as though they’re straining and therefore I can’t focus on anything, I get headaches, I yawn continuously, I feel the need to stretch my entire body, I sometimes get leg cramps and arm cramps that last hours or days, I feel brain foggy/ confused / dizzy as though I’m not really real and it feels like a dream state. These symptoms can happen at any blood sugar level (in range or out of range) These symptoms affect every aspect of my life, I feel as though I’ll never be able to get a full time job as I wouldn’t be able to stay awake and I’d feel really ill if I was to have lunch so if I had a job I’d have to not eat all day to try limit symptoms, it ruins for instance holidays abroad as you can wake up feeling fine then you eat breakfast and you want to go back to bed and you can’t go explore, you meet up with your friends for a coffee and some cake and five minutes after eating/ drinking you’re exhausted and can’t continue the conversation anymore and have to go home and the doctors in Scotland couldn’t be more disinterested in helping me, last time I was in I burst out crying literally trying to beg the doctor to help me and he just let me leave after I had sat there for twenty minutes continuously saying “please help me”.

I’m literally trying EVERYTHING to try get to the bottom of it I’m currently off gluten for a few weeks to see if that’s it, I’m taking daily multivitamins, exercising more, drinking more water, sleeping more and alas NOTHING. that’s were you guys come in, if any of Yous have had similar symptoms and have been able to get rid of them please let me know as it’s ruining my life and is making it feel like it’s not worth living anymore.
 
@Whitney King Have you had allergy tests to see if it’s some kind of food or cosmetics or dust/mould allergy? The puffy and tired eyes made me think of that.

Also, have you had your Vit D tested, along with iron levels, etc etc?

How is your blood sugar? High blood sugar can cause tiredness and dehydration.

My other thought is a reaction to your insulin. A number of people can’t tolerate the analogue insulins and the symptoms they have included extreme tiredness, brain fog, aching limbs.

The IDDT is an excellent source of info about this. Perhaps you could email/phone them for info?

https://www.iddt.org/about

Perhaps you could discuss a trial of older insulins to see if that helps? If you google and look on this forum using the search tool, you’ll see other people reporting similar issues to yours which resolve with a change of insulin.
 
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Inka said:
@Whitney King Have you had allergy tests to see if it’s some kind of food or cosmetics or dust/mould allergy? The puffy and tired eyes made me think of that.

Also, have you had your Vit D tested, along with iron levels, etc etc?

How is your blood sugar? High blood sugar can cause tiredness and dehydration.

My other thought is a reaction to your insulin. A number of people can’t tolerate the analogue insulins and the symptoms they have included extreme tiredness, brain fog, aching limbs.

The IDDT is an excellent source of info about this. Perhaps you could email/phone them for info?

https://www.iddt.org/about

Perhaps you could discuss a trial of older insulins to see if that helps? If you google and look on this forum using the search tool, you’ll see other people reporting similar issues to yours which resolve with a change of insulin.
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thanks for your reply. I have asked a few times for an intolerance / allergy test to be taken out however, they won’t let me. I do have nasil allergies and have multiple sneezing fits a day which include anything 15 plus sneezes at a time, however they don’t believe this to be connected.

they took a routine bloods a few months ago and I’m not sure if that shows vitamin deficiency’s but they said it looked fine, however I’m eating so many multivitamins now to see.

In terms of my reaction to insulin, I never actually thought of that. The symptoms did begin as soon as I got home from the hospital after diagnosis. I’m on novorapid and tresiba at the moment. Can’t see my team offering me new insulin’s though they keep telling me to go to the gp but then the gp tells me to go to them it’s a mess
 
@Whitney King If your GP has ruled out everything obvious and you know you’re eating well, sleeping ok and have got good control of your diabetes, then looking at your insulins is a sensible next step.

Not every insulin suits every person. You’re entitled to have the insulin of your choice. IDDT will help and support you and provide evidence. If you’re feeling so bad and no other cause has been found, it’s definitely worth a try IMO.
 
Sorry to hear about the nasty symptoms you are experiencing @Whitney King

Since you say that the symptoms do not seem to be directly related to BG levels, it seems that it might be something else to me - though an allergy to some components of the insulin is a possibility and a good thing to check.

Let us know how you get on
 
You say you have allergy problems (sneezing) Do you have a deep rooted sinus infection? I know as soon as I need to sleep in the afternoons my infection is back. This also includes can't keep eyes open and loosing the focus. As soon as the right antibiotic is given it clears up within days. I was also given a nasal spray this affected my vision though so stopped using it.
I always blamed my fatigue on MS but suspect it's more to do with the recurring infection.
 
Pumper_Sue said:
You say you have allergy problems (sneezing) Do you have a deep rooted sinus infection? I know as soon as I need to sleep in the afternoons my infection is back. This also includes can't keep eyes open and loosing the focus. As soon as the right antibiotic is given it clears up within days. I was also given a nasal spray this affected my vision though so stopped using it.
I always blamed my fatigue on MS but suspect it's more to do with the recurring infection.
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not that I know of, I’ve never had my allergies really looked at, they’re something I’ve had since I was very young and the only thing the GP did was give me some antihistamines which didn’t work so I stopped taking them. I find the supermarket nose spray to be more helpful.
 
Whitney King said:
Thank you, I just had a look through it, sounds pretty similar, it’s a shame we never got to find out if the new insulin fixed their symptoms or not.
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It is a shame. But other people have seen a resolution of their symptoms so it’s most definitely a ‘thing’. Whether it’s the cause of your symptoms, I don’t know but it’s more common than realised and certainly worth thinking about.
 
Inka said:
It is a shame. But other people have seen a resolution of their symptoms so it’s most definitely a ‘thing’. Whether it’s the cause of your symptoms, I don’t know but it’s more common than realised and certainly worth thinking about.
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Do you have any idea which insulin I should try ask for? What insulin’s have seemed good for other people in other posts? I asked for fiasp once as I thought the tiredness was coming from the spike as I ate and they said no that they prefer me on novorapid, is there many others? In regards to my background insulin, the symptoms have been present whilst using both Lantus and tresiba.
 
How high do you spike after eating? Are you injecting your Novorapid enough in advance of eating so that it gets working as your food pushes your blood sugar up and so it can limit this rise? It would be well worth looking to reduce any spikes if that’s an issue for you. I’m presuming you carb count and adjust your mealtime insulin according to the amount of carbs you’re about to eat?

If it was me, I’d first be careful to rule out other medical causes eg anaemia, thyroid, etc, then secondly make sure my blood sugar was controlled eg reducing any spikes and trying to keep in range as much as possible, so that I knew it wasn’t that making me feel bad.

Then if the symptoms still continued I’d think about a change of insulin. As you probably know, we have animal insulin, human insulin, and the analogue insulins (which are pretty much the majority of what you’ll see around - ie Fiasp, Lantus, Novorapid, etc etc are all analogues. Both human and analogue insulins are genetically engineered, animal insulin isn’t. Animal insulin is what we had for decades and decades. Then came ‘human’ insulin (genetically engineered to resemble our own insulin), and some time after came the analogue insulins which have been manipulated to get certain effects eg to be absorbed faster or slower. Some of those engineered changes cause a few people problems and they don’t tolerate those insulins.

You would need to discuss any change in insulin with your team. Most of the people I googled and read about, changed to animal insulins, some swapped to human insulins, a few found it was one particular analogue insulin causing their issues and that another analogue insulin was fine. You’re an individual and what might be the perfect insulin for one person might not suit you - and vice versa.
 
Novorapid and Fiasp are both ‘insulin aspart’ so likely to be quite similar in formulation I think.

Humalog and Apidra are both well known analogues that might be worth trying.

Levemir and Lantus are earlier analogue basals, or you could go old school with Insulatard or Protaphane (though those are ’peakier’)
 
Inka said:
I found a chart of available insulins from Diabetes U.K. which helpfully divides the insulins but it’s not totally up-to-date:

https://www.diabetes.org.uk/resources-s3/2017-11/wallchartinsulins.pdf

Is there a newer version @everydayupsanddowns ? I like the way it makes it easy to see what’s similar.
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I tend to look in the Diabetes UK ‘meds and kit’ supplement for those comparisons

 
Inka said:
How high do you spike after eating? Are you injecting your Novorapid enough in advance of eating so that it gets working as your food pushes your blood sugar up and so it can limit this rise? It would be well worth looking to reduce any spikes if that’s an issue for you. I’m presuming you carb count and adjust your mealtime insulin according to the amount of carbs you’re about to eat?

If it was me, I’d first be careful to rule out other medical causes eg anaemia, thyroid, etc, then secondly make sure my blood sugar was controlled eg reducing any spikes and trying to keep in range as much as possible, so that I knew it wasn’t that making me feel bad.

Then if the symptoms still continued I’d think about a change of insulin. As you probably know, we have animal insulin, human insulin, and the analogue insulins (which are pretty much the majority of what you’ll see around - ie Fiasp, Lantus, Novorapid, etc etc are all analogues. Both human and analogue insulins are genetically engineered, animal insulin isn’t. Animal insulin is what we had for decades and decades. Then came ‘human’ insulin (genetically engineered to resemble our own insulin), and some time after came the analogue insulins which have been manipulated to get certain effects eg to be absorbed faster or slower. Some of those engineered changes cause a few people problems and they don’t tolerate those insulins.

You would need to discuss any change in insulin with your team. Most of the people I googled and read about, changed to animal insulins, some swapped to human insulins, a few found it was one particular analogue insulin causing their issues and that another analogue insulin was fine. You’re an individual and what might be the perfect insulin for one person might not suit you - and vice versa.
Click to expand...

I try to inject novorapid about 10/15/20 minutes before eating however I have quite bad hypo anxiety so usually more to the ten minute mark. When I spike it’s usually within about fifteen minutes after starting to eat, it can go up to anything mostly around 12mmoll and sometimes if I’ve really badly carb counted it can go up to 15mmoll - 17mmoll. I feel symptoms regardless of what it spikes up to I feel just as bad at a spike of 11mmoll-12mmoll as I do with 15mmoll - 17mmoll (or even if it just goes up to about 9mmoll).

in regards to ruling out I was on the phone to the GP today and they were pretty useless, I was suggesting tests that could possibly help such as intollerance / allergy tests / vitamin deficiency tests and they were saying there’s not much point and are AGAIN referring me to my diabetic team (who last time referred me to the gp so they just keep going backwards and forwards to each other and we’re not getting anywhere)

last time I asked about a change of insulin they were pretty much set on the idea of me staying on novorapid as my blood sugar range and hba1c were ok. it’s honestly so awful, every diabetic appointment I’ve had (maybe about six in four years) I’ve mentioned these symptoms and it really feels like nobody cares. I mentioned how I don’t feel I’d be able to work a full time job as id either have to starve myself all day in the hope that symptoms wouldn’t be as strong, or eat and suffer the consequences and they still won’t do anything, it sucks :(

thank you for your replies ! 🙂
 
last time I asked about a change of insulin they were pretty much set on the idea of me staying on novorapid as my blood sugar range and hba1c were ok

You’ll probably have to push a bit and be firm. It’s not just your HbA1C - it’s how you feel. You have to live with Type 1 24 hours a day.

I’ve found in general that I have to be a bit firmer and ‘abrupt’ than I normally would be to get listened to. I tend to prefer polite discussions but sometimes with medical stuff, I’ve had to be much terser: “No, that’s not acceptable to me” kind of thing, and literally sit there until they respond and acknowledge my points. I don’t think they mean to ignore people as individuals, they just get into a way of working and responding, and sometimes you need to put up a verbal Stop sign to get proper consideration.

As you can see from the very helpful booklet linked to above, if you want to try animal insulin, it would be Hypurin Porcine Neutral for your mealtime (bolus) insulin, and Hypurin Porcine Isophane for your basal. You’d probably need two injections of that per day as it’s duration of action is shorter.

If you want a simpler initial change, maybe try Humalog for your bolus insulin. Personally I’d avoid Lantus if you were going to change your basal too. Most of the issues are with that from what I’ve read. Obviously many people are ok with it but many aren’t and it doesn’t make sense to change to an insulin that’s known to cause problems for some people when you’re already having problems.

You’ll probably find a lot of resistance to animal insulin or older insulins, but that’s simple prejudice and it’s you who has to live with this condition not your team.
 
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