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Hypo & Hyper Breathing Difficulties

Discussion in 'Type 1 Diabetes' started by RAH79, Feb 14, 2016.

  1. RAH79

    RAH79 Type 1 · Active Member

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    Hello All,

    I could really do with some help!

    I've been Type 1 for 26yrs and I'm on Novorapid & Levemir (I'm not on pump). Over the last 3 weeks, I have been experiencing fluctuating BGs (pls see previous posts for background). When I'm high (+15mmol) or low (-3.1mmol) I experience a chest tightness and severe shortness of breath which is becoming really scary, I've never experienced this before. I get the sensation that when I breathe I'm just not getting enough air into my lungs. I get out of breath walking up stairs where I have to stop and catch my breath (I usually keep active and was exercising regularly until recently).

    I've been to GP, who did a peak flow test and I couldn't get it over 300 (I was hypo at time) so GP prescribed inhaler, I've been using it when high or low and it does help relieve symptoms a little, but once sugar levels return to target range symptoms almost disappear apart from continued chest tightness and tiredness. Had full blood tests, all came back normal.

    I've been in contact with DSN regularly and they just shrug their shoulders, I've asked them if this is common and they just give me the usual vague response or they keep telling me to go back to GP as they keep telling me not everything is due to Diabetes, but surely it is, if I only experience these symptoms of high or low BGs? So frustrating.... This is really concerning as I don't know what to do anymore and it's debilitating enough where I'm having to have time off from work because I can't recover from the hypos or hypers as quickly as I used to. I have one or two good days when my levels are stable, but one hypo or high just sets it all off again and I can't afford to take any more time off work.

    Please can someone help, no one is giving me any answers and it's having a significant impact on my daily activities...can someone tell me if they have experienced these symptoms? If so did you find a cause for it? How long do these symptoms last when low and high? What do you do to treat it or make it go away?
     
  2. RAH79

    RAH79 Type 1 · Active Member

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    Please, is anyone able to help or has anyone had similar symptoms?
     
  3. robert72

    robert72 Type 1 · Well-Known Member

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    Hi @RAH79

    I had symptoms like that when I was suffering from anxiety - do you think your highs and lows could be causing something like that? It's been a lot better since my levels have been better controlled.
     
  4. Gaz-M

    Gaz-M Type 1 · Well-Known Member

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    @RAH79 do you smoke at all? I had this at its worst last year and I spent 8 days in hospital and 8 weeks off work.

    Mine was due to copd/pneumonia and an enlarged left side of my heart, I am not saying this is what you have by the way but it does sound familiar
     
  5. Ambersilva

    Ambersilva Type 1 · Well-Known Member

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    Yes.

    At diagnosis, when I was in DKA with high ketones. I would be out of breath halfway up a short staircase and needed to stop and rest until recovered. Some of us have meters that can measure ketone levels when our blood sugar is high.
     
  6. RAH79

    RAH79 Type 1 · Active Member

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    Hey thank you so much for your responses. In answer to your questions:

    I understand the anxiety link and I thought this is what it was originally as I have experienced stress in the past but this is different. I don't feel stressed at all, or anxious, at the moment I feel more frustrated than anything as I don't understand what's going on.

    I don't smoke and never have, I've never had any breathing problems or issues with my lungs which is why I'm at a loss as to what has changed to cause this.

    Ketones have been consistent 0.1 / 0.2 over a period of time due to being on a low carb high protein diet. Ambersilva, what was your ketone levels when you were feeling poorly?

    My only possible reasons that I can think of could be ;

    * New hypo symptom (although this seems to be rare compared to other typical symptoms)
    * Link to aspartame poisoning (http://www.md-health.com/Aspartame-Poisoning.html) although since reading this article I have dropped any aspartame products.
    * Can you get DKA symptoms if you have low levels of ketones in system over a period of time?
    * or I have developed asthma (although I can't find anything that relates to hypo / hyper induced asthma - does anyone on here suffer with asthma and diabetes? If so is it triggered by extremes in BGs?

    I'm at a loss, it's effecting my confidence as I don't want to leave the house on my own in case something happens. I intend to go to GP tomorrow but wanted to check here first to see if anyone else experiences this and whether it is related to diabetes or something else and what they have done to overcome it or cope with it?
     
  7. Natalie1974

    Natalie1974 Type 1 · Well-Known Member

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    Hi @RAH79. I seem to recall reading something about euDKA? I'm fairly sure that shortness of breath was a symptom...but is usually brought on by a certain group of drugs...the name of which escapes me now. I know when I had DKA that shortness of breath was a real problem for me but if you've had your bloods done and they're not showing high ketones it would seem to rule that out.

    Had a little google and found the following link...might be worth a read...something else to rule out

    http://diatribe.org/fda-issues-safety-statement-sglt-2-inhibitors-may-cause-diabetic-ketoacidosis

    Hope you feel better soon...
     
  8. azure

    azure Type 1 · Expert

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    @RAH79 I have asthma and I developed it as an adult. I didn't realise that was possible at the time. I'm not sure if that helps you at all, but I find I go through spells where I don't have it for weeks, and then times when I seem to get it every day. Nights can be particularly bad then, and things like cold weather can set it off. If I'm tired and have missed sleep that can make it worse too.

    The only other thing I thought of was that it could be hormonal. I had a few months where I'd wake up at night and feel like I couldn't breathe at all. It was very frightening. It wasn't asthma and I didn't know what it was. I eventually found out it was related to a hormone imbalance after the Pill. It was a really horrible feeling. Again, I don't know if that's relevant to you, but I thought I'd mention it as it was something I'd never have thought of if I hadn't experienced it. I'd also say that because it was so scary, I used to get panicky and, of course, that made it worse.

    For me, sitting upright, coughing (doctor recommended this - something to do with a nerve, which I didn't understand really), concentrating on breathing slowly and deeply for a few minutes, then distracting myself by reading or something helped me. I too thought it was blood sugar related, but apart from the fact it felt worse when I was low, it turned out to not really be related to that.

    So - hormones. Worth a check if only to rule it out. I hope you feel better soon :)
     
  9. Ambersilva

    Ambersilva Type 1 · Well-Known Member

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    I don't know what my ketone levels were at diagnosis. I only know that it took four days for the level to return to "normal" so that I could be considered for discharge from hospital.
     
  10. RAH79

    RAH79 Type 1 · Active Member

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    Hello

    Thanks for your responses, Natalie, that was an interesting article, it did make me wonder if I was taking any meds that might be linked but I'm not taking anything that's related.

    Azure, that's a good point, I have noticed my breathing especially chest tightness has been a lot worse today and it might be because of the sudden cold weather and going in and out of the house.

    I went to Drs who sent me to hospital to have chest x-ray to rule everything out which is good. Dr went through my last blood results (which I was told was normal) but he said that the results showed high liver enzyme and he thinks it might be due to a virus as previous blood results last September showed normal levels. I'm therefore hopeful that this will go away as I agree with you Azure it is very scary. I will try the cough thing though when it gets bad, thank you for suggesting that.
     
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  11. Steph652

    Steph652 Type 1 · Newbie

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    Hi RAH79,

    Just joined diabetes.co.uk today to find out more info on what you are asking about.

    I've been type 1 for 30ish years and for the last few been getting short of breath on stairs etc. Definitely happens when I have level of over 14 or so. I am fairly active and sometimes absolutely fine. My control does fluctuate and as this feeling happened so gradually over the years I have just lived with it. Today has been noticeably worse hence joining the site.
    I have mentioned it in the past at my clinic and not got much of a response. I will be paying more attention in the future and will be asking my doc etc. Can't test my ketones unfortunately so I guess this may be the first thing I need to do.

    I hope you get it sorted and I will keep you updated of any progress I make.
    All the best :)
     
  12. RAH79

    RAH79 Type 1 · Active Member

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    Hello Steph and I'm glad you've joined the forum. I'm not sure if it's comforting or worrying the fact that you are also experiencing something similar to me and we have both been type 1 for approx the same (not sure if that's coincidence). I'm still waiting for the x-ray results but I will definately let you know the results as soon as they have been received.

    I've had a really bad day with chest tightness today. I had a high this morning of 18mmol so I didn't get the best start as my chest was hurting when I woke up. But by afternoon I was able to get it back down to 5.9mmol. When it;s bad it feels more like a knot other than sharp pain and it's located right behind the sternum and goes to my back right behind the right shoulder blade. I tried to get back to doing some exercise today (walking slowly on treadmill) but it didn't help and it got worse when I tried to take a deep breath.

    Do you only get these symptoms when you are over 14mmol or do you also get it when you are low? Also how long do the symptoms last for? Does it get better when your BG's return to target range?
     
  13. jal16

    jal16 Type 2 · Well-Known Member

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    Hello, I get shortness of breath a lot but had put this down to one of the symptons of anaemia? I was only diagnosed diabetic T2 last month and my BG levels are high at the moment always in the early to late teens, so I wonder now if it could be like you have posted here, due to high BGs? I very often have to stop in the middle of walking to breathe deeply and also if I am even sitting down for a meal to try to catch my breath, like yawning etc. Its very uncomfortable. I hope you feel better soon. I cant wait to get my BG's under control and see if it helps. Let us know how you get on :)
     
  14. mindy

    mindy Type 1 · Member

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  15. mindy

    mindy Type 1 · Member

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    Hi, I usually become breathless and feel like my chest is tight during Hyperglyceamic episodes and I suffer pain all over my body in random places such as feet, legs, head and so on. Once my blood sugar starts dropping I begin to feel a bit better but this process takes me between 2-8 hours! I understand your desperation as nobody seems to understand that alongside a high BG there are physical symptoms attached. I have questioned my own sanity on several occasions. Sadly nobody really seems to appreciate how debilitating and uncomfortable this is.
     
    • Hug Hug x 1
  16. RAH79

    RAH79 Type 1 · Active Member

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    Hi Mindy, I completely know where you are coming from! I have questioned myself over the last few days going from feeling like I'm messing people around to people generally just don't care if it;s not written in some text book or proven by research approved by NHS, then I get the symptoms back and I'm like "No I'm definitely not making this up!"

    I went to A&E last Thursday evening because my shortness of breath and chest tightness was really bad and I'd had enough, my BG was 15.8 mmol. I went into A&E and told them I was a Type 1 with breathing problems, so I got seen by triage within 10 minutes (There was a massive queue in the waiting room so I felt really bad jumping the queue, but knew I had to get something sorted). I had an ECG and bloods taken. I went in at 9.30 pm and by 6.30 am the following morning (yup 9 hours later) I was seen by an A&E Dr for the results. All ECG and X-ray results came back clear (which is a relief!), I explained symptoms and told him that I felt it was related to BGs he said he had never heard of this symptoms that was linked to high or low BG (apart from DKA which was ruled out given that I had a Hb1Ac of 57 and ketones was 0.2), however he did admit that he was only an A&E Dr that specialised in life threatening situations i.e Heart attacks, broken bones, stitches (I felt very guilty at this point for wasting his time), He said that there wasn't anything else he could do apart from suggest I see a diabetic consultant. I saw a registrar later that day who said that it could be a symptom but reiterated the need to get BGs under control, I told him how I have been trying to do this for over 3 weeks now but Diabetic DSN and dietician have no answers I had a CGM fitted for a week and all they told me following the results was "Ooh yea it is all over the place, but we can't figure out why" << NOT HELPFUL! So he said he would make recommendation to my consultant that I go on pump. I've also tried to rule out other possible reasons such as acid reflux (symptoms do not go after taking rennies or any other products), asthma (x-ray clear and although inhaler helps when symptoms are bad, does not stop it from returning). The only link I have is that the breathing and chest tightness starts when BGs are below 3.0mmol or above 15mmol.

    I called DSN today to ask for timescales on pump, she said it first has to be recommended by Consultant so I would need to see him first (even though DSN has been talking about putting me on a pump for the last three weeks, she has only now told me I need to see consultant first) My six monthly review was due this month anyway so called booking office to make appointment. 14th April 2016 is the earliest I can be seen!!! Arrrgghh this is soooooo frustrating!!! No answers, no help, no support I am completely on my own, no one understands me, I get the feeling they think I'm making this up!! I know this is diabetic related I can almost tell without doing a test what my BG is just by the state of my breathing / chest tightness....*** why is the NHS so reactive instead of proactive, I've never in my lifetime been admitted to hosptial due to DKA I've tried everything to sort this out and get things under control, I am absolutely exhausted!! Do you really have to go DKA before they listen to you!!?....sorry rant over, I've just had a gutsful and feeling at a complete loss... :(
     
    #16 RAH79, Feb 22, 2016 at 9:00 PM
    Last edited by a moderator: Feb 22, 2016
  17. nmr1991

    nmr1991 Type 1 · Well-Known Member

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    I get this all the time, but mostly at night time when I sleep, but I think its mainly down to second-hand smoke which is impossible to get away from because the house is pretty much filled with it, no windows or anything would help as much though. Every time I catch my breath, even when i'm lying or sitting down I run out of breath I get the occasional cough followed by a chest pain, but i've pretty much lived with it for a couple of years now, no blood tests have come up with anything. I told the nurse/dsn that I have palpitations from time to time, heartburns, anxiety/panic attacks, shortness of breath, they say it is related to my diabetes because they see that my HbA1c has been high for a prolonged period of time and that its putting strain on my heart.

    A note, i'm not really an active person, on average I don't go out most days, only the once or twice a fortnight to the jobcentre which is a necessity which is only a miles walk there and back. Also underweight so maybe thats a contributing factor.
     
  18. RAH79

    RAH79 Type 1 · Active Member

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    Please Please can someone at least suggest what to do as I'm starting to lose the plot, I'm physically and emotionally drained! I can't control this anymore!

    I am finding that since I first met with my DSN and dietician about my initial BG fluctuations 4 weeks ago I have increased my Levemir from 16 to 24 to try and control the morning highs and the subsequent hypos throughout the day. I feel this only brought my levels down for a short period and my levels have now gone back to the way it was if not worse i.e last night I was 14mmol I did a correction dose as my bolus advisor advised, however this morning I was 18.8mmol. The night before I was 6.9 before I went to bed, the following morning I was 19.6mmol. I'm trying to eat carbs as advised by dietician as was previously on very low carb diet but I feel this is not helping me. I have improved carb counting and amend my ratios but I'm seeing absolutely no improvement in my sugars, in fact they appear to be more erratic (as I mentioned earlier my morning reading today was 18.8mmol but was as low as 2.8mmol before lunch which scared me as I felt as if I could've passed out and I was on my own at home). I can't control this anymore and I'm feeling really unwell, scared and extremely concerned. My chest and breathing issues have not improved and I'm basically at my wits end with it.

    I've since found out that Levemir is known to only last 12 to 14hours so could this be the cause of why I have been battling to control my levels? I have for the last few days split my Levemir as advised ny my DSN, but it's not helping, I'm still getting highs in the morning. Should I try Lantus as I don't know how long it's going to take before I can try the insulin pump? However I've just seen nmr1991 sig stating that "I'm beginning to see my Lantus stop working altogether, maybe my body built a resistance to it or it lost its effectiveness, maybe I can discuss that at next dsn meeting." What the hell is going on???!! I'm tired of going to my GP, A&E and then going to DSN and not getting anywhere. Could it be that I have a problem digesting carbs as the A&E Dr suggested that it could be related to delayed stomach emptying? Could it be that my insulin just isn't working effectively because the increases in insulin only appear to cause more hypos then for unknown reasons subsequent highs causing a roller coaster effect. I can't control the dramatic fluctuations in sugar levels. I need to know what's going on or what's causing this? I've been suggesting things to DSN i.e Aspartame poisoning, Asthma, heart problems, lung problems, but all ECG and x-rays and tests are coming back clear. I don't seem to be getting anywhere? Please can you help?

    Is there anyone on here that has gone from Levemir to Lantus and seen an improvement, is there a reason why DSN would not suggest Lantus for me right now? Are there side effects? Could this be a mild version of Brittle Diabetes? Is there anyone on here that has Brittle diabetes that can confirm if what I'm experiencing sounds familiar?? I can't cope anymore, I'm trying so hard!!! I feel that I may as well eat ****, smoke and drink because I'm still getting the same effects!! I've never had DKA, I eat very healthy and I have done everything I can, but I just feel like I'm losing but don't know why.....

    Please I'm feeling very low at the moment and I need to know if there is anything else I should be doing or trying???
     
  19. robert72

    robert72 Type 1 · Well-Known Member

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    Sorry to hear this @RAH79 - sounds like there are multiple variables. Personally I would go back to basics. Eat the diet that you are happy with and do some basal testing. I know you are probably fed up with all this but it looks as if that's the place to start over. When I was on Levemir I took a split dose as it certainly didn't last 24 hours for me, so I would carry on with splitting. If you have a bad day, put it behind you and start again tomorrow. There are plenty of us here to offer support.
     
  20. RAH79

    RAH79 Type 1 · Active Member

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    Hi Robert

    I did a basal test and these were the results ;

    Breakfast - (breakfast was 15g carbs and I used 1:3g therefore did 5 units of novorapid)

    0 hours - 8.4mmol
    1 hour - 9.0mmol
    2 hours - 9.4mmol
    3 hours - 10.0mmol
    4 hours - 14.3mmol

    Does this not prove that even Novorapid is not lasting long enough as it is only spiking within last hour?

    Then I was told by my dietician that I shouldn't have done this because this test is used for patients on pump therapy and to ensure Basal dose is correct for injection patients they would just used morning readings (which mine is bad anyway!). They didn;t even offer any advice on the above.

    I completely agree to start a fresh, the only diet regime I found helped to regain a good BG level and feel better in myself is if I go to extreme i.e low carb of 30g - 50g max per day and 800 to 1000cal per day, which according to my dietician is not sustainable, but this is looking more appealing compared to what I'm going through right now. I just can't win!! :(:(:(
     
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