Jump to content
Diabetes forums
  • Welcome To Diabetes Forums!

    Registration is fast, simple and absolutely free so please, join our community today to contribute and support the site.

Averaoxi

I've been having a lot of concerns about diabetes, especially breathing problems

Recommended Posts

Averaoxi

So basically, ever since I first noticed that I was showing signs of diabetes, I started having these weird issues with my breathing.

To go from the start of it, basically in the two year pre-diagnosis of Type 1 Diabetes when I was experiencing the signs of diabetes, I had these issues with my breathing that included:

  • having to take in deeper breaths
  • having trouble with doing things like bending over, and it feel like I'm partially suffocating
  • not being able to wear tight things around my neck without it feeling like it's choking me
  • having issues with laying down, where I would feel like I'm being suffocated
  • the feeling of my thyroid shifting around more than it should, having some slight effect on my breathing
  • the sensation of a solid mass somewhere in my neck

Now, when I discovered I had diabetes, I had been put on insulin for the first time, and my breathing had gone away along with my blood sugar doing much better. NOW, around that time I started coughing up what I later discovered to be tonsil stones. Won't really get into much details about that, but if you've had them you know what I mean.

 

Anyway, sometime later I was eventually told I have Type 2 diabetes (my current endocrinologist says I have Type 1, Im not really sure at this point), so I had gone on metformin for a while, and my blood sugar had gotten a lot better (originally before then, it was all over the place, but before I was on metformin, I still somehow manage to have a decent A1C, despite having highs and lows frequently). Eventually I came to realize she wasn't giving me proper guidance, and only gave me more questions I had, than ones I had answered.

 

So, for about a year, I was taken off of medication for good, unfortunately. It was an extremely rough time for me, as I ate little to no carbs, while my blood sugar still spiked up frequently. Eventually I was put with a new endocrinologist, but I'm currently looking to see a new one all together.

 

Anyway, ever since I was taken off my medication, my breathing issues actually came back (they disappeared when my blood sugar was doing really well, but seems to show up when my A1C isn't doing very well), however it's gotten worse.

 

As of now, my breathing problems have not only included the previously listed ailments, but new issues that have arised:

  • Having extreme difficulty finding some place comfortable to lay down or sleep
  • sleeping that usually at most lasts for 6 hours, if I'm lucky.
  • Sometimes when laying down, and after waking up from a "night's rest" I wake up panicking rather heavily, feeling like I can't breathe, and am barely conscious, trying to get extra air
  • constant popping in my jaw, as if there's some malleable substance lining it (I actually went to the dentist sometime in 2017, and they could quite literally feel my jaw popping, and found it rather concerning)
  • lay down in a certain position, and despite feeling alright, suddenly my body starts going unconscious in a rather violent manor, to which it feels like I am feeling a sense of suffocation
  • if my blood sugar spikes up to around 300, my breathing gets so bad that I'm basically just sitting there praying it relieves soon (it does relieve a bit more once it goes down, but not completely
  • Using methods of clearing my sinuses has a brief feeling of relief, but not by much
  • As of late I switched to a different brand of long-acting insulin, and as a result it feels as though it's having an improvement on my breathing situation. However it isn't nearly to what I deem as acceptable, but there is signs of improvement.

 

A lot of these things are extremely concerning for me, as I've had to put my life on hold for over 3 years now with doctors who seem to not really care about what I'm dealing with.

 

Now, before anyone asks, YES, I did visit an ENT recently, and had an endoscope through my sinuses to check if there's any swelling in my sinus, and throat. As far as they could tell, it looked normal. To describe the feeling a bit better, it feels as though the muscles around my throat seem to get irritated during rather high blood sugar.

 

Now, I do have EXTREMELY sensitive sinuses, as when the ENT used a nasal spray to loosen the mucus, it stung so bad that it literally felt like ghost peppers were shoved in my nose. The doctor found it extremely concerning, as he's never had that happen before, and suggest that I my sinuses are extremely sensitive, and I can attest to that, as when I was a kid I had nosebleeds VERY frequently, multiple times a month, as a reaction to the changes in air pressure during weather changes.

 

If anyone's had an experience (or experiences, including multiple different diagnosis's etc.), I'd greatly appreciate hearing your perspective, especially if you have any advice I should take. 

Share this post


Link to post
Share on other sites
dowling gram

HI and welcome to the forum.

I think there is something else going on besides Diabetes. It may or may not be a combination of things but it's certainly not something you'd want to live with. Diabetes may be a factor but I don't think it's the main issue.

 

Have you had your thyroid tested. Hypothyroidism can cause breathing issues. An under-active thyroid can cause many things including swelling and closing in of the throat.

 

Also allergies can close up your nostrils and effect the sinuses. I know that's what happens to me when my allergies are bad and I do a lot of mouth breathing then but I never have the issues you describe but they may be 1 factor.

 

I do hope you find out what's wrong . It must be scary not being able to breathe

Share this post


Link to post
Share on other sites
Averaoxi
5 hours ago, dowling gram said:

HI and welcome to the forum.

I think there is something else going on besides Diabetes. It may or may not be a combination of things but it's certainly not something you'd want to live with. Diabetes may be a factor but I don't think it's the main issue.

 

Have you had your thyroid tested. Hypothyroidism can cause breathing issues. An under-active thyroid can cause many things including swelling and closing in of the throat.

 

Also allergies can close up your nostrils and effect the sinuses. I know that's what happens to me when my allergies are bad and I do a lot of mouth breathing then but I never have the issues you describe but they may be 1 factor.

 

I do hope you find out what's wrong . It must be scary not being able to breathe

Hi, yes, I did have my thyroid tested. As far as they could tell, everything was normal. However it was my family doctor who had made that test for me. ORIGINALLY it was my current endocrinologist who was suppose to make that test, but he literally forgot about it when I went to the appointment with him, and unfortunately, I never even had a chance to say anything to him about it. He kept going on about how I'm "wrong" for not doing what he told me, with managing my diabetes. Didn't even bother asking me if I was doing anything to aggravate my blood sugar, just kinda kept going on the same thing.

 

Apparently my current endocrinologist says I have anti-bodies in my test, therefor saying I have Type 1 Diabetes. But as I said, he was suppose to check my thyroid, but just basically decided screw the whole thing in terms of the test he had for me. Not sure why, but I can see how this is a major concern. As my previous endocrinologist had done some tests, and said I had Type 2. POSSIBLY because if I do have hyperthyroidism, that's what's giving me anti-bodies, but I don't know how I can have that even individually distinctly tested.

Edited by Averaoxi

Share this post


Link to post
Share on other sites
meyery2k

Welcome!  Thyroid function is evaluated from the results of a simple blood draw.  In my case, I did not have sufficient TSH (thyroid stimulating hormone) and was prescribed Levothyroxine which fixed that right up with no side effects that I am aware of.

 

In the USA the blood and urine labs ordered during a wellness check include testing for thyroid function.

 

Reading some other experiences people have with their doctors, I feel fortunate to have a good PCP.

Share this post


Link to post
Share on other sites
Kit

Hi Averaoxi, welcome to the group.

 

Ok, so there are some pretty big differences between T1 and T2 diabetes.  In fact, they are entirely different diseases that happen to share the same symptom (high BG levels).  So a correct diagnosis is quite important.  However, many doctors seem to still think that T1 only happens to children and T2 is for adult fat people.  neither of those ideas are correct.  There are skinny T2s who were diagnosed skinny.  There are T1s who were diagnosed in their 50s, 60s and later.

 

If your endo said you had antibodies and were thus a T1, he is correct.

There are a few different antibodies that can show up.  Often you can have more than one or even all of them.

http://www.diabetesforecast.org/2015/sep-oct/tests-to-determine-diabetes.html

 

C-peptide is testing for how much insulin you are making, the rest are antibodies that are specific to autoimmune attacks on the Beta cells of the pancreas.  Positive results for antibodies means you are a T1 diabetic, nothing more, nothing less.  They do not indicate whether or not you have any other autoimmune disorders.  In order to do that, you would need to have blood tests specifically for those disorders.

 

Now When you have one autoimmune disorder (such as T1 diabetes), it is not uncommon for you to have more.  Thyroid disorders, such as Hashimoto's (in this case antibodies are attacking your thyroid) can often go hand in hand with T1 diabetes.  So it is important that you get the appropriate blood tests  to see if this is indeed the case.

 

I highly recommend to everyone that if a doctor gives you blood tests that you always get a copy of the results and look up exactly what the blood tests is looking at.  That way you KNOW if your thyroid, or whatever else is of interest, has actually been checked.

 

I am not very familiar with thyroid issues beyond some basics, so I can't say whether or not your symptoms are consistent.

 

Another potential possibility might be the simple straight forward you are having an allergic reaction to the insulin you are taking,.  The insulin you are taking is not just the insulin hormone.  There are other substances as well and its possible you may be having a reaction to one or more of those.  It has happened to a few other members here, so its definitely a possibility and your symptoms really sound very similar to an allergic reaction.  

Share this post


Link to post
Share on other sites
Kit

Realize I didn't clarify above.

 

When you are tested for antibodies, you are tested for very specific antibodies.  There is no guessing if they are antiobodies for T1 diabetes, hashimoto's, or something else.  GADA isn't going to attack your thyroid.  It will attack the beta cells in your pancreas.  On the other hand, ATA will say whether you are having an attack on your thyroid, but says absolutely nothing about diabetes at all.

 

And none of the symptoms are in any way consistent with diabetes itself.

Edited by Kit

Share this post


Link to post
Share on other sites
Averaoxi
1 hour ago, Kit said:

Realize I didn't clarify above.

 

When you are tested for antibodies, you are tested for very specific antibodies.  There is no guessing if they are antiobodies for T1 diabetes, hashimoto's, or something else.  GADA isn't going to attack your thyroid.  It will attack the beta cells in your pancreas.  On the other hand, ATA will say whether you are having an attack on your thyroid, but says absolutely nothing about diabetes at all.

 

And none of the symptoms are in any way consistent with diabetes itself.

Right. Actually, what prompted my previous endocrinologist to say I had Type 2 diabetes, was that my c-peptide levels were much higher than they should have.

Now, last year I did try applying for an insulin pump, but apparently my c-peptide levels were at 1.0, but they couldn't do anything about it unless it was at most .5. I think I did have them try checking it again, and he might have mentioned something about having a larger amount of c-peptides, but to be honest having a conversation with him, he wasn't very clear about it. But as I said earlier, I literally have no opportunity to say anything during my appointments. I have, like, at most 5 seconds.

 

I appreciate all the support though, really. I'm doing what I can to get better, but it's hard. Like, I do know that I'm capable of managing my condition, I've proved it to myself before, but I feel like my current doctors aren't giving me the opportunity to help myself.

 

But anyway, thank you all so much 💖💖💖

Share this post


Link to post
Share on other sites
moneymeister

I went to the ER years ago after issues with breathing. I was diagnosed with reflux disease. The acid backed up and fumes would irritate my lungs, causing them to spasm. I would notice it when bending and lying down. Also, would wake up breathless and would pace around til I could sleep. I take Omeprazole to control symptoms and haven't had it for ages. Could it be related to heartburn/reflux?

Share this post


Link to post
Share on other sites
Averaoxi
9 minutes ago, moneymeister said:

I went to the ER years ago after issues with breathing. I was diagnosed with reflux disease. The acid backed up and fumes would irritate my lungs, causing them to spasm. I would notice it when bending and lying down. Also, would wake up breathless and would pace around til I could sleep. I take Omeprazole to control symptoms and haven't had it for ages. Could it be related to heartburn/reflux?

Maybe? I had acid reflux frequently when I was younger,  but I've not really noticed it in a while

Share this post


Link to post
Share on other sites
moneymeister
2 minutes ago, Averaoxi said:

Maybe? I had acid reflux frequently when I was younger,  but I've not really noticed it in a while

 Well, you could take a OTC trial - 2 weeks of Omeprazole and see if it helps?

Share this post


Link to post
Share on other sites
steel
7 hours ago, moneymeister said:

I went to the ER years ago after issues with breathing. I was diagnosed with reflux disease. The acid backed up and fumes would irritate my lungs, causing them to spasm. I would notice it when bending and lying down. Also, would wake up breathless and would pace around til I could sleep. I take Omeprazole to control symptoms and haven't had it for ages. Could it be related to heartburn/reflux?

 

 

I have the same symptoms. I notice difficulty breathing when bending down, but I am fine when lying down. I also experience some chest discomfort when I lean forward, and it gets better when I lean back. This is more intense right after I've eaten. Your post is very helpful. Thanks. :)

 

--

 

Having  breathing trouble when bending down and lying down can also be heart related. More so, the lying down part...if you wake up from sleep because of shortness of breath...it's best to see a cardiologist as well. I don't think breathing troubles are caused by diabetes. Diabetes can cause things like kidney and heart problems, for which shortness of breath is a symptom. But diabetes itself doesn't cause shortness of breath, unless a person is in DKA or close to it. Nothing you said indicates that OP. I think this could be (and just my opinion) related to gastrointestinal issues, heart issues (hopefully not), asthma/allergies if you also have wheezing but get a Lung function test anyway just to get an idea of how things are. I have hypothyroidism. It went untreated for a while, and things got pretty bad but it didn't cause breathing problems. The sensations in your neck ...the solid mass isn't thyroid related, from what I know. It sounds like a reflux issue. Much less likely is the heart...anytime you have shortness of breath, which gets worse when lying down, you've gotta make sure the heart is checked out. I hope you're able to get a nuclear stress test, not the regular one as it's not very sensitive. An Echo and nuclear stress test should rule out any deficits in heart function which can cause some of the symptoms you described. Shortness of breath when switching positions, especially if standing up from a lying down position can be POTS related (postural orthostatic tachychardia syndrome). In this case, you would have a transient increase in heart rate as well. But yeah, if your heart and kidney function is well and good, gastrointestinal issues and allergies would be the other concerns.

 

I developed shortness of breath after severe anemia. It got better after transfusions, but it came back afterwords. I couldn't even walk a block without having to catch my breath. I decided to try antihistamines to see if they helped. Fortunately, they did. I am doing better now, but I still have some shortness of breath from time to time. I noticed the suffocating feeling when bending down, a few days back. It's all very disconcerting, and I am sorry you're experiencing it. I have had heart tests done, which were normal. But I need a few more, a repeat echo and possibly a CT coronary angiogram. I also have a lung function test coming up. It's very important to get to the root of something like breathlessness. It's great you're seeking opinions and noting your symptoms in detail. We have to fight the tendency to zero in one cause, as multiple things could take place at the same time - allergies and reflux for instance.

 

Definitely get your thyroid tested. As @Kit said antibodies for Hashimoto's are different from those for T1D, but what happens sometimes is that T1 antibodies can be present without T1 having become symptomatic yet. In your case, it's obviously symptomatic so I'd agree with your endocrinologist on the T1 diagnosis.  T1.5 would likely be what you have. It has a longer honeymoon period, which can make BG control harder. That'd also explain your c peptide levels being higher, but if you've tested positive for T1 antibodies (there's a total of 5 that are tested - IAA, ICA, GAD, ZnT5 and one more I can't recall), they will drop over time. That reminds me...feeling short of breath when your BG is high may also result from anxiety. High BG can cause anxiety and general physical discomfort as well, which may exacerbate breathing issues or bring on shortness of breath. The anxiety would be the likely culprit in case of breathlessness with high BG.

 

I hope I didn't overwhelm with the info. I am trying to get to the root of my own breathing issues right now. I'll share any other info that comes to light over the coming weeks. Hoping and praying you find the right diagnosis and treatment asap. I know it's an awful situation, makes a person feel helpless. I've only been dealing with it for a few months, and it's been very tough. It can put your life on hold.  Struggling to breathe on minor exertion is something only a person suffering from it can understand. I took walking and mobility for granted, because I'd never had such issues. It's taught me a lot about valuing my body's abilities and so many simple functions that one can take for granted.  I can't imagine suffering for 3 years. Please keep pushing for answers, and we're here to support you.

 

Edited by steel

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×

Important Information

By using this site, you agree to our Terms of Use.