Fed up of feeling ill

[Natalie123]

I have been feeling unwell ever since I was diagnosed and started on insulin. I am always very tired especially after meals, I can't get up stairs so have to take the lift up any more than 1 floor at work, I get breathless after short walks (less than 1/2 mile) and I get very hot and sweaty a bit like a fever and my vision goes a bit blurry and I get disorientated. When I check my blood sugars, they are fine.

Does anyone get simmilar symptoms to me? Is this normal for diabetics? I have had these symptoms for 7 years now and keep asking my GP about them. I have had many tests all of which were negative, so, as far as my GPs have been concerned there is nothing wrong with me or its all in my head! It is really getting me down, I work in a lab and find walking around difficult and everyone I work with finds it hard to understand. I am taking anti depressants to deal with anxiety and low mood which has helped a little. I struggle to concentrate too and find I often feel detatched from the world as if I am in a movie or painting (this is very hard to explain to anyone else!). It is annoying because I don't remember what it is like to be normal - maybe I am imagining things. But on the other hand, before my diabetes and these symptoms started I was really into mountain walking and climbed Snowdon twice, it is very frustating not being able to even cope with stairs at the age of 23!!!

Sorry about the rant, I am just fed up of replies like "its in your head", "your just unlucky", "you just haven't found the right insulin type yet" (but no one ever suggests a change), "it will sort itself out soon" or I just get passed on to a consultant who decides there is nothing wrong and then I get passed onto someone else!!

 

[chrismbee]

Dangerously blind alley, this one, but have they tested for ME?
Your symptoms are very similar to the daughter of a work colleague ....

THIS IS NOT A DIAGNOSIS !!!

 

[Natalie123]

Dangerously blind alley, this one, but have they tested for ME?
Your symptoms are very similar to the daughter of a work colleague ....

THIS IS NOT A DIAGNOSIS !!!

Thanks for the reply chrismbee. No, as far as I know they haven't, maybe I will ask when I next go to my GP. The thing is that the symptoms have not got worse over the 7 years, just stayed the same - my GP said it isn't likely to be serious or I would have got worse by now. Don't worry - I know that no one can diagnose me 🙂 I just wondered if there were any suggestions that I could pass on to my GP / DSN

 

[chrismbee]

I and others I know have benefited greatly when seen by a locum at the surgery, rather than one of the regulars - think they may possibly have greater enthusiasm to diagnose, rather than being trapped in the routine of day-to-day consultation.
If you don't feel satisfied with the GP's response, ask for a second opinion.
You've got nothing to lose and everything to gain.
It's your health in question here, so don't be put off by mediocrity - be the demanding patient. 🙂

 

[Ellie Jones]

A couple of things to consider..

I can give an explination for your breathness and the following symptoms, as similar happens with a panic attack that puts the gases in the blood out of kilter... So it's could be possible that what happening is a learnt conegitive thing...

But also some of the symptoms you mention are consistant with what some have experienced when they don't get on with human insulin, one of the worst culprits seems to be Lantus!

If you feel that this sounds like you, it may mean that you would fair better returing to animal insulin therapy, the medical profession see animal insulin as very old fashioned and say that a Basal/Bolus regime can't be done with it, but it can takes a bit more work sorting it out, as you are working with a 30 minute time delay before eating, and the profile is slightly different than human insulin but for some this works to their advanage..

There is a website/charity concerning animal insulins. I can't think of it's name off hand but I know that there animal insulin users on the forum, who hopefully will be along with the necessary links and more information

 

[Natalie123]

Chris - This sounds sensible - I should really ask for a second opinion and not feel bad about it.
Ellie - I heard about this is a previous post I put up - I think it does sound a bit like me, the site is IDDT I think. I was never on animal insulin before so I don't know if they would even consider it as a possibility but it is worth me asking - the worst they can say is no

 

[Liz!]

IDDT - I use animal insulin, didn't get on with human or analogues. Animal works more slowly but is gentler somehow. I can only explain that when I went on it my body felt calm for the first time for a very long time. It was a bit like the difference between eatin rbbish like enumbers and drinking coke and eating fruit and veg and properly!

Here are the symptoms of peope who do not get on with human or analogues:

* 41% – loss of warnings of hypos or ‘I function on automatic pilot’.
* 34% – extreme tiredness or lethargy
* 9% – sleeping all the time
* 32% – weight increase of 1.5 stones [21 pounds] and above
* 28% – feeling unwell all the time
* 24% – memory loss or confusion
* 9% – blood glucose levels dipping and peaking erratically
* 8% – described by their families as ‘not the same person’
* 5% – mood changes, described as difficult to live with
* 7% – pains, especially ion the legs and joints
* 4% – irregular or late periods

This is the web address of IDDt for more information:
www.iddt.org

 

[Ellie Jones]

Not having used Animal insulin just means that you haven't got a comparison bewteen the two...

I've used both insulins, started out on Animal then analogues and now human, the only noticable difference I have is that I don't succombe to DKA on humain insulin, I actually never had it with human only when I used animal insulin!

Same with my husbad he had a terrible time with animal insulin he was runing out of them due to producing anti-bodies to them.. Not had this problem with human/analogues.. His noticable difference was hypo's one of his hypo symptoms was sweating big time with animal, but human insulin he doesn't start to sweat until he's a lot lower, so had to adjust his awareness to his hypo symptoms..

The only problem I have with the DTT site it's very much based around that if you use human insulin you are completely doomed... Which of cause if you haven't got any issue with human insulin then you aren't..

At the end of the day, I actually knew somebody who would be violently sick if they ate mushrooms as they were allergic to to them! So do we ban all mushroom?

 

[Robster65]

I was thinking possibly ME like Chris suggested.

But it could well be an intolerance too. Rather than just limit the scope to insulin, have you thought of anything else you may be allergic/intolerant to ?

I would agree with Ellie that human insulin only affects a minority but it may that you're in that group, so worth asking if you can try an animal alternative.

Rob

 

[Liz!]

IDDt do not advocate banning 'human' insulin! i get their magazine and people on human insulin belong to IDDt and they are not banned either! In fact IDDT helps anyone on insulin.

But their organisation was formed because the woman who started it's daughter was made very ill indeed by 'human' insulin.

They do stress that animal can and does give as good control as human and analogue, but this is to counter the opinions very widespeadly held that it is either not available any more or in some way inferior, which for most people is very far from the case.

You can get antibodies to human and analogue as well. Some people have them to all three types.

IDDT's mantra is 'The Voice for Choice' I wrote that, being a poet, but it perfectly sums up all that they stand for - you, the patient, should have a choice and it should be kept open.

 

[Natalie123]

Rob - I haven't noticed anything in particular that makes things worse but it could be something that I eat regularly like milk or bread I supose. How can you find out if you are allergic to something? So far the only thing I know I am allergic to are two types of antibiotic but I only found that out by having a bad reaction.

 

[Liz!]

I am allergic to thinhgs and it is typically that sort of person ewho does not tolerate human. You can at least try it! But you wil need support. If you think it might be that, then try emailing Beverly at: enquiries@iddtinternational.org and explaing how you feel and see wat her advice is on how to approach your Dr about it. They have helped many people in the same situation. You usually try when you haven't found anything else that works!

 

[Robster65]

To be honest, I've no idea since I've never been allergic to anything but Liz may be able to advise.

I would guess your GP would be your first port of call but maybe you'd be better seeing a different doctor if you possily can. Beware of any home testing kits. I think there was a BBC article the other day saying that a lot were not suitable.

I always think it better to approach these things with an open mind and see what the evidence suggests rather than narrow your search to one particular thing and restrict your options. It may well be insulin but it may be the aftershave a colleague wears ! 😱

Or it may be something as yet undetected.

Rob

 

[Catwoman76]

I have been feeling unwell ever since I was diagnosed and started on insulin. I am always very tired especially after meals, I can't get up stairs so have to take the lift up any more than 1 floor at work, I get breathless after short walks (less than 1/2 mile) and I get very hot and sweaty a bit like a fever and my vision goes a bit blurry and I get disorientated. When I check my blood sugars, they are fine.

Does anyone get simmilar symptoms to me? Is this normal for diabetics? I have had these symptoms for 7 years now and keep asking my GP about them. I have had many tests all of which were negative, so, as far as my GPs have been concerned there is nothing wrong with me or its all in my head! It is really getting me down, I work in a lab and find walking around difficult and everyone I work with finds it hard to understand. I am taking anti depressants to deal with anxiety and low mood which has helped a little. I struggle to concentrate too and find I often feel detatched from the world as if I am in a movie or painting (this is very hard to explain to anyone else!). It is annoying because I don't remember what it is like to be normal - maybe I am imagining things. But on the other hand, before my diabetes and these symptoms started I was really into mountain walking and climbed Snowdon twice, it is very frustating not being able to even cope with stairs at the age of 23!!!

Sorry about the rant, I am just fed up of replies like "its in your head", "your just unlucky", "you just haven't found the right insulin type yet" (but no one ever suggests a change), "it will sort itself out soon" or I just get passed on to a consultant who decides there is nothing wrong and then I get passed onto someone else!!

Dear Natalie Sorry to read about your ongoing problems. I would suggest going back to your Doctor because it's obviously affecting you alot. Has the Doc tested you for an Underactive/Overactive Thyroid Condition ? Or Chronic Fatigue syndrome or TATT ( Tired all the time) Some of the symptoms of CFS

is :- Prolonged servere fatigue
impairment of short term memory
muscle and joint pain
unrefreshing sleep
headaches
prolonged fatigue and feeling unwell after even mild exertion

I hope you find something that's helps, at 23 it must be quite distressing, take care Sheena

 

[Northerner]

Natalie, it might be a good idea to find out from your GP what exactly you have been tested for in the past so you can discount some of the possibilities - doctors aren't always forthcoming about what their various tests are for so you may never have been told if you've been tested for, say, thyroid problems. My thoughts were also ME or CFS when I read your post. I hope you can make some progress, it must be so disheartening and frustrating to feel like this for such a long time.

 

[Natalie123]

Thanks everyone for your support, I am feeling a lot more optimistic now 🙂

 

[Natalie123]

I have definitely been tested for tyroid problems, this always comes back borderline so I get this checked regularly. I will make a list of things to ask when I next go to the doctors including finding out what tests I have already had - it would be nice to know what I don't have at least!

 

[Northerner]

I have definitely been tested for tyroid problems, this always comes back borderline so I get this checked regularly. I will make a list of things to ask when I next go to the doctors including finding out what tests I have already had - it would be nice to know what I don't have at least!

Indeed! I hope you get all your questions answered satifactorily, don't let them fob you off! 🙂

 

[Natalie123]

Thanks everyone for your suggestions, I am off to the DSN on Friday and am making an appointment to see a different doctor that I know I see eye to eye with next week! I will let you know how it all goes.

So, from what I have heard so far, am I right in thinking that these symptoms are not normal for diabetics?

 

[Catwoman76]

Thanks everyone for your suggestions, I am off to the DSN on Friday and am making an appointment to see a different doctor that I know I see eye to eye with next week! I will let you know how it all goes.

So, from what I have heard so far, am I right in thinking that these symptoms are not normal for diabetics?

Everyone is different Natalie, what's not normal for you may be normal for someone else and vice a versa. Have a really good talk with your DSN on Friday and they might be able to shed some light on it. Good luck and best wishes Sheena x