• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Could it be Autonomic Neuropathy?

C

Craig1986

Member
Messages
9
Hi. I'm gonna apologise in advance for the long winded post it's my first time, but my fiancé and I are in need of some advice if anyone can help?

I'll give a little background info before I get into our problem

My fiancé is a type 1 Diabetic, and has been for the past 22 years. Around her late teens to early 20s, her blood sugars weren't controlled greatly, sometimes not at all. She was hospitalised with DKA twice. In the 5 years we've been together, her control has improved, and I'm so proud of her for doing so!

The reason for my post is this:
She's been complaining of stomach pains for the past 8-9 years. She had blood tests to rule some things out, nothing showed up. Happy days. Her old GP did no further investigation, claimed it was IBS. She was told to try the FODMAP diet, find her triggers, avoid those foods where possible. Which we did. And found it made no difference. Tried smaller portions, and that seemed to make the littlest difference. Over lockdown, things got a little worse. To the point where she was in tears with the pain. So, we got in touch with her doctor's surgery, and we spoke to someone different this time. Happy days! A second opinion. We explained all the symptoms over the phone, and he decided it wasn't IBS, or just IBS anyway. He agreed to a face to face appointment, and had a hunch it could be gastroparesis.
So we attended the appointment, and he instantly started focusing on her bowels.....not her stomach. After explaining that she eats an average amount of fruit and veg in her diet, and having a feel around her bowel area (not her stomach), he ruled out gastroparesis, diagnosed it as 9 years of constant constipation. My fiancé got incredibly upset, told him he ignored the stomach pain completely and cried her way out of the office. She was given a prescription for Fybrogel on her way out. All of the doctors she has seen, tend to ignore the stomach pain and focus on her bowels.
So, diagnosis in hand, we came home, and I did my usual bit of Internet research. Whilst looking at "diabetes and constipation", I found an article on this website, and as much as it said there was no real worry, I stumbled across an article on Autonomic Neuropathy. I know this could be a grasp at straws, but hang on 2 secs....
She was told by her doctor of 10 years she has erratic blood pressure
She has dizzy spells
She's on Oxybutin(?) For excessive sweating
She has stomach pains and issues
Our sex life is.....complicated, because she has arousal issues and when she is interested, she struggles with lubrication issues (sorry. TMI I imagine, I always put it down to her depression)
Her last eye exam shows signs of retinopathy
All of which her regular doctor is aware of (ok, maybe not the sex life part). But is it possible these are all related?! Are they focusing on one thing at a time, and maybe missing a bigger picture? Or am I potentially clutching at straws with the idea? I have emailed her Diabetes team asking for advice too. But thought I would see if anyone had any opinions on here while I waited

Thanks for taking the time to read this essay, and I apologise for it being so long. I just can't stand to see her so defeated all the time over it all.
 

I understand your frustration but why feel a need to put a label? Neuropathy and any other diabetes-related complications are generally irreversible, the progression can be slowed but the damage is usually long lasting.

Looking forward your wife should really think about getting a tighter blood glucose control. The symptoms she has can be attributed to high blood sugar in some cases... when I have a high BG I feel hot, flustered and sweaty, leading to my diagnosis I was very constipated probably because all the water in my food was being sucked out so my blood could be diluted. This may or may not be the case for your wife.

I do not have enough information on celiac disease but I am aware it is an immune response to gluten and can cause stomach issue accompanied with either diarrhoea or constipation. That may be an option you may want to look into especially since she’s type 1.
 
I appreciate your reply
It's not that I necessarily want to put a label on it, but we've improved her blood sugars greatly, from late 70s/early 80s, down to mid 40s. Its just that her conditions seem to be getting worse? And as much as its irreversible, there are things that can help. Like medication for helping with stomach emptying etc.
We've improved on everything in the past 12 months, and I know it's not necessarily gonna get better that quickly. I just want her to be able to eat a meal without sitting in agony I guess.
I think maybe the next option is to rule out all gluten full stop. We've cut back on a lot as it is. But we'll see what happens I guess
 
Hi @Craig1986 , and welcome to the forum!
Craig1986 said:
I have emailed her Diabetes team asking for advice too. But thought I would see if anyone had any opinions on here while I waited
Click to expand...

I think her diabetes team is the place she wants to ask her questions, not the GP. If she's getting her regular diabetes check ups with her diabetes nurse and endocrinologist, possible diabetic complications are something they should look into regularly. Has she spoken about her troubles to them before?

No matter if the cause is gastroparesis or something else altogether, like gallstones or such, getting the right diagnosis seems pretty important. Many ailments can be helped or even fixed with the right treatment.

Would she be interested to join the forum herself?
 


Craig - nobody here can give you any kind of diagnosis. That's really for your partner's medial team to do.

Living with pain is dispiriting, but unfortunately, as you are finding, it can sometimes take a long time to pinpoint the cause.

Is there any pattern to when the pain happens? Is it every day, or fine some days and dire others?

Has your partner ever tried keeping a really detailed diary of what's going on, to try to find any patterns or rythms?

In her shoes, I would try doing a iary, for at least a month, recording:

What I ate, drank, blood sugar levels, insulin used, if she is pre-menopausal, when my cycle started any symptoms I had, any pain on a scale of, say, 1-10, and any other symptoms or mood.

I realise that's a bit of a commitment, but once a notebook or spreadsheet is set up, it shouldn't take ore than moments to fill in.

That might just throw something up, but it would also shw the medics that you guys are doing your best to get to the bottom of things too.

Good luck with it. I do hope you find some answers soon.
 
The symptoms are not typical for people with T1 diabetes, so I would be looking for other causes. Yes, autonomic neuropathy symptoms can vary, but as a layman I can see no reason to think this is one of them. Another autoimmune problem, perhaps? Sounds like some type of food is doing it. Doing a more exhaustive elimination diet may show up the food intolerance. An endocrinologist may be able to help.
 

Yeah I really really recommend removing 1 item of food for like 2 days to see if it helps but the thing with gluten is that I’ve heard it can take weeks after eliminating gluten before your symptoms are relieved.

Maybe go gluten-free for a month or two and if nothing happens then revert back to your old diet
 
Thanks for all of your replies!
DCUKMod - I apologise, I could have worded it better. I wouldn't expect a diagnosis should have said I was looking to see if anyone had been through similar experiences. She has said about keeping a diary and going into the finest of details. She's only 28, but she's so conscious of everything going on, mainly the excessive sweating from doing very little, that she's in a very closed in state. Doesn't like leaving the flat much etc. But maybe keeping a track of menstrual activity, diet and activity etc is the best way to go for now.

Antje - that's all we want to know. She is very aware that anything is most likely caused by her earlier poor control, she accepts it's on her. But if there are things that can help her, then that's what we want to find out. I have mentioned the forum to her in the past, she's just very shy, and feels people might take the mick out of her grammar and spelling. Think she could do with being on here though.

Type Zero and Mark - yeah I thought the FODMAP may have helped identify intolerances, but then we were eating gluten on that, and maybe that is the thing to eliminate on a long term basis. Which she has said she is more than happy to do. See if that makes a difference.

My main concern is I don't want her to lose faith in the process she's made, and feeling like people aren't listening? And as I said, it could be that the doctors are right. I just know how bummed out she is about it, and I don't want her taking a huge step backwards etc. She really wants to try for a baby in the near future.
 
Craig1986 said:
she's just very shy, and feels people might take the mick out of her grammar and spelling.
Click to expand...
Going off topic here, and speaking with my mod hat on: Can you please tell her that if ever anyone ridicules someone for their grammar or spelling on this forum they'll at least get a stern talking to, and more likely an official Warning. Multiple Warnings lead up to a ban, and if the bullying is bad enough we can decide to ban right away, without the build up of Warnings.

Writing and spelling comes pretty easy to me (despite the mistakes I make in your language ), but my best friend has serious problems with it. Doesn't make her in any way a lesser person. I'm very glad she doesn't let this stop her from sending text messages and using social media, but I'm also very aware how much more difficult it makes life in general.

Dear partner of Craig, please don't let either diabetes or difficulties with writing stop you from doing the things you like or need!
 
I'll let her read this and hopefully it inspires her to get on board with the forum I'm sure she'll appreciate it!
 

Craig, if your partner is open to making changes, I applaud her, but I would seriously urge that she firstly creates a benchmark set of data - without making any changes, else it's less easy to identify changes and impacts. If she starts collecting data and changes something, she will never know if the changes she made had much impact.

On the gluten option, I would strongly suggest your partner has a blood test to assess whether or not she needs to give it up. To be tested properly, the person has to be regularly eating gluten (and have been for some weeks), when the test happens, else the results could be skewed. Your partner's Endo or GP could order these tests.

Giving up gluten is a big commitment, and has to happen for a minimum of 3-6 months for a proper assessment. It isn't just giving up bread or cakes, gluten hides in many places, including cola drinks and Worcestershire Sauce - just as examples.

I eat a gluten-free diet, on the instructions of my Endo. I tested negative for Coeliac, but then I was already not eating most gluten when tested. (For the avoidance of doubt, I don't think I have Coeliac, but I do have an adverse reaction to gluten).

I would suggest your partner makes a plan, for doing this. If it were me, I would do a month, making no changes, then review that data. It could be you will see something that points to a potential problem. Maybe eating x or y leads to a bot of an attack, or that her symptoms relate to certain sages in her cycle, or maybe even something like stress.

There are so, so many variables, but you need a starting set of data, to make whatever you do meaningful.
 
The bench mark makes sense. And to be fair, that would probably tie in with her next 6 monthly check up with her team. So we can also discuss things with them.
See she had blood tests done 8-9 years ago, and because they came back negative, none of the doctors we've spoken to will order anymore tests? But surely problems can develop over time? Or they say she's too young to be developing these sorts of issues.
I appreciate the input, I think your advice is good on the approach to the diary. Create a base line to measure off, and make changes later to see what differences are made, if any.
Like I say, I don't want her to have anything major wrong. I just feel like a diagnosis of constipation seems like a bit of a weird one, and that surely if her sugar level control and diet has improved, that things would get better? Which is why we feel it doesn't necessarily fit? But thats for discussion with doctors
 

Bloods done 8-9 years ago are all very interesting,...... but useless in assessing any current situation. It is also noteworthy that when it comes to antibody tests; a negative antibody test rarely completely rules out any given auto-immune condition. For both T1 and Rheumatoid Arthritis, around 20% of those with T1 and Rheumatoid Arthritis are sero-negative, meaning they don't show any antibodies, but it is the starting point.

I don't know if your partner has online access to her medical records, but that, and keeping spreadsheet records can be a useful means of recording and assessing a direction of travel of some health markers. Of course, it can help (or hinder!) being a bit of a data geek (like me).

Again, I'd urge a period of data gathering.

If it comes to looking at intolerances, I'd firstly look at dairy. Many, many people are a bit sensitive to dairy. Dairy is easier to assess, in that improvements are usually seen quickly, and unlike gluten where a gluten free diet has to be absolutely gluten-free, dairy intolerances tend to improve even with reduced dairy intake.

Sugar levels and dietary improvement will help everything, and is the way to be, but please don't pin everything on diabetes. You could potentially be closing your mind to other issues.

At this stage, I urge an open mind, and open notebook/spreadsheet and mind in hoover mode, sucking in as much data as you can. In time, you can move to microscope mode to examine all you have gathered, but please do urge her to keep the bloods tight, where she can, but don't expect flat line blood glucose. It seems T1 doesn't play that game!
 
I will just say that people with diabetes can also have unrelated conditions. It could be nothing to do with her diabetes. It could be a hiatus hernia or anything.

I recommend keeping an open mind, getting a few months of data, and talking to her diabetic team when you can.

Also, as something to think about, if her sweating is due to anxiety, a stomach ulcer is another thing to ask a medical person about.

Sending vibes to you both.
 
And this is why I'm now really glad I put this post up! A lot can change in 8-9 years, and I really can't get my head around why they are so reluctant to redo them!
So, being the basic I am when it comes to gathering data, short of carbs and insulin doses, what data should we be tracking? Sorry, thats a really novice question I'm sure. And I appreciate both of you mentioning the fact. But I'm sure she'd want to do things correctly, so if you have any suggestions?
I try not to see everything as diabetes related. But sometimes that's where my head goes with it all. The only reason I researched it the way I did yesterday was more to do with seeing if it would impact her sugar levels at all. And then I saw the article about neuropathy, and all the pieces fit. But like you both say, just because you hear hooves, don't automatically assume horses.
And yeah, I've seen a lot of the swings and roundabouts game with her Type 1. Periods throwing stuff out of whack, insulin changes, happiness one minute, defeat the next. I just wanna help her get everything sorted.
After she lost a baby last summer, she was determined to give herself the fighting chance she deserved. Especially knowing that its harder for her trying to get and being pregnant. Don't get me wrong, we've never said it was anything diabetically that caused the miscarriag, obviously there are many reasons why they happen. I think it just woke her up in terms of getting tighter control over things. I couldn't be prouder of the progress she has made! Its just seeing the signs of defeat when she feels no one us listening to her i guess that has me asking these questions.
 

Craig, it's easy for me to say "record everything", but of course, that's not helpful.

I'd do with everything she eats and drinks, broken down into eating/drinking episodes, so breakfast x, you or z, snack, lunch, dinner and so on. The insulin she takes a test each individual mealtime/snack, along with blood glucose readings. How she feels in herself - fine/a bit off/unwell/hormonal or whatever. Her cycle. Her symptoms. Her pain levels, recorded on 0-10. And of course,notes for anything else she feels. If she thinks, "could this be important?", then get it recorded.

If you are looking towards parenting, your partner could ask to be referred to the preconception team. Obviously they are looking towards preparing for healthy pregnancy and baby.

It can take a while to work out these puzzles, so the challenge can be patience.
 
Antje77 said:
I think her diabetes team is the place she wants to ask her questions, not the GP.
Click to expand...

I second this, as most GPs aren't that clued up about diabetes in general, T1 more so than T2, and are particularly clueless about T1 complications.

I've been tested for coeliac disease more than once, when I naively asked my specialist why it needed testing again when I hadn't had it before he told me that you can develop it any age and its a relatively common comorbidity with T1.

Also, if you tell your team that you want to try for a baby then there's a good chance that they'll do a proper panel of blood tests even if they weren't going to anyway.

As regards poor control in one's teens, I was a poster child for this (pre glucometer and I stopped bothering to do the urine tests which were via a tablet, 5 drops of urine, 10 of water in a test tube). My control was awful. When the hospital gave me my first glucometer in my early twenties they suggested that I might like to try to get my average blood sugar below 13!.

Maybe I've been lucky, but it's never too late to improve your diabetic control (still a work in progress for me after 50 years of T1) and a lot of complications can be stalled or even turned round by means of better control (I've had on again off again background retinopathy for decades).

I was lucky to have two relatively healthy pregnancies in my latr twenties and early thirties (healthy for the babies, a little stressful for me) and I can definitely say that poor past control is no reason for not being able to successfully have a baby. (And very many non diabetic pregnancies unfortunately end in miscarriage, it's just that people tend not to talk about it.)

Good luck with this, do encourage your partner to come here for support and get her to push her team to try to identify what is happening to her. It may or may not be connected to diabetes, but there is no reason for her to keep suffering like this without help from medical professionals.
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…