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Urgent help advise needed - grateful for any suggestions

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R

Rap

New Member
Relationship to Diabetes
Type 1
Hello to all of you,

I was wondering if anyone is experiencing autonomic neuropathy symptoms like irregular bowel habits, bladder problems (at almost self catherization level), feet/Hand quickly going numb when sitting down, burning thighs etc., and how you are managing it?

I have already tried FODMAP, excluding gluten and other things.



I got officially diagnosed a few months ago via an urodynamics test after I kept insisting on it as doctors just could not/still cannot believe it that it is possible with my hba1c to get it. Even nowadays they still cannot really believe it. I live in London and would be happy to see another consultant, also private who can show me an alternative.

I have been T1 for soon 15 ys (age 29 nowadays) and my Hba1c has been around the 6,5 mark for the first 10 and for the last 5 around the 6 mark with the last 5.8.
During this time I was checking my levels 8-12 times a day. 6 months ago i got my first pump and for last 12 with libre. I started getting stomach problems 4 ys ago followed by bladder problems around 2 years ago.

Admittedly I always had a bit of a too tight control with lows 2,3 times a day and highs up to 14. I always hated It when my sugars went above 8 therefore over corrected quite a bit.
Through the libre I could clearly see that for lunch and dinner, after around 2 1/2 hs after food intake, I almost always have to inject same insulin amount as originally injected to avoid another spike which for sure cost me 1000s of highs.
E.g inject 6 units at 2 pm eat at 2 30, 72 cabs, at 5 pm have a nice 6 and if I do not inject any insulin will go up to 12 or more within an hour with sugars peaking at around 16-18.

Also could see what impact a mackerel salad or so has, worst pizza, where I get like spikes after 2 1/2 and 5 hs.

Nowadays I got Libre plus Medtronic enlite to help me keep levels tight but ideally avoid Low sugars. I also got no hypo awareness left.

Thanks for your suggestions as it is having an enormous an effect on life quality and therefore appreciate all your input.


Thanks for reading my post.

Kind regards,
Ra
 
Hi Ra, welcome to the forum 🙂 Sorry to hear about the problems you are suffering :( Have you been examined for gastroparesis, or slow stomach emptying? I guess your situation illustrates why the HbA1c is not a reliable guide on its own to levels of control, if you have discovered swings from low to high through using the Libre, I'm very sorry to hear you find yourself in this situation despite apparently good control.

We do have members who have suffered similar problems, so hopefully they will be along to share their experiences.
 
Hello Northener and Grovesy, thanks for your message and very cute pics you have there 🙂

I was actually discharged by my gastro team as all examinations were negative. My emptying can be rather fast or almost impossible to get out, so far has not affected my sugar levels.
Looking forward to hear of members who have suffered similar problems and how they lived with them as my life is getting worse and worse at the moment. Just now having a 5.6 my thighs are already slightly burning :(
Thanks again and please feel free to share my story as it increases likelihood of getting better suggestions/advice.
 
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Hi Northener, nobody got back in touch with me yet. Could you ask some follow sufferers maybe?

Thanks a lot.
 
Howdy, I have a similar situation to yours with all the symptoms you report plus some heart related ones that are currently being investigated. Similar to you I have obsessed over tight control until recently after an epiphany. I have delayed gastric emptying, numbness as you describe, constant issues with arrhythmias. The official diagnosis until a month ago was IBD, Cubital and carpal tunnel syndrome, Arthritis in many forms, psoriasis and heart disease. Even I thought I was bloody unlucky until the dots got properly joined together.
The big risk to both of us is that of the heart. Hence the tight control until recently statement.
 
How do I live with it?

I just have to get on with life as best I can. I became so depressed that I could not function. I now try to stay distracted and follow a low GL Diet which helps. I find that life is more bearable when I am preoccupied and I now try to stay constantly busy.
 
Hi Owen,

Sorry to hear but somehow also glad that I finally found somebody with same symptoms.
May I ask how long did it take for you to get aut neuropathy from point of diagnosis?

Are you still working normally or have you changed things now? I am in so much pain sometimes that I can barely sit down properly. I may have to change my career as I work in a classic office job.

Did you find anything that helped you so far?
How did you find support? I feel like giving up eventually as it just gets worse and I cannot seem to stop it.

What was your ephiphany?

I have got so many questions and very glad I found you.

Kind regards,
Raph
 
By doing very little or nothing, I found that I focussed too much on the problems and not getting on with living. So I was first sent to a Gastroenterologist, scoped both ends, at the same time had a nerve conduction test and also sent to a dermatologist, a psychotherapist, a chiropodist, a cardiologist and a physiotherapist (oh nearly forgot the endocrinologist). The hard task was getting all these "ologists" to actually realise there was any connections. I was on a concoction of meds that would make your average 80 year jealous. I forgot the urologist. Anyway the drugs helped a little but not much. As regards life, I just decided that this was becoming too inhibiting so forced myself to do something.

Diet, I eat little and often avoiding bread, potatoes, pasta and rice. I eat a lot of tuna, salmon, actually a lot of fish. I eat chicken and cold meats along with broccoli, cauliflower, carrots and fruit. All of this has slowly helped and my symptoms are becoming less troublesome. I still have daily gastric pain although this is manageable. I loose sensation in my hands and feet, I wear gloves as the slightest amount of cold causes pain. I still don't know what to do about the cramps a and thigh burn. I now refuse to let this beat me. I have regular arrhythmia and SVT (normally sort this out with Valsalva). I have learned to revisit loo and double check everything is okay. I have eased off such tight control to good control as this did not reduce the symptoms but increased the risk of cardiac problems. The change of diet means I only use small amounts of insulin and maintain a good BM without as much risk of hypo's.

I volunteer as a Medic with my local ambulance service, this along with work keeps me so occupied that I no longer have time to dwell on things, this in turn has helped me cope. Please feel free to pm me.
 
Hi Rap

I do not suffer the same symptoms as you have described, but I was reading your details of how you have to repeat a basal injection dose after waiting two hours. That makes me wonder whether you have your basal rates set correctly. Have you done a fasting test to check these?

I also tend to work on tight control, and found that the fasting tests helped me to get the basal rates correct which then enabled me to sort the carb ratios and correction ratio.
 
Ps
I also find that I need different rates for carbs and corrections during the day.
 
Hi Owen,

could you actually imaging having a Skype convo as I got quite a few questions?

hat is your Hba1C nowadays like? How many lows/highs do you have per day? Are your symptoms actually stable now? Is your bladder control okish?
Is it constantly bad or are there days/weeks when it is better?
I currently am having a good week after terrible weeks before. Just over time have the feeling the good weeks are getting less and less :(

Ever heard of that momordica charantia? My next thing I will try as it just arrived from Thailand.
 
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Rap said:
Hi Owen,

could you actually imaging having a Skype convo as I got quite a few questions?

hat is your Hba1C nowadays like? How many lows/highs do you have per day? Are your symptoms actually stable now? Is your bladder control okish?
Is it constantly bad or are there days/weeks when it is better?
I currently am having a good week after terrible weeks before. Just over time have the feeling the good weeks are getting less and less :(

Ever heard of that momordica charantia? My next thing I will try as it just arrived from Thailand.
Click to expand...
If PM a contact number, I can get hold of you tomorrow. Sorry I have to dash out just now to a clinical assessment call.
 
Hi Owen, not sure how PM works on here but my Skype is rappo14. Could you add me so I can contact you after I get my new phone soon?
 
Rap, you should be able to contact Owen via PM (click on his profile and 'Start a Conversation'). We don't encourage posting of personal contact information on the forum, to protect your privacy.
 
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