Exhausted and about to give up

[Riri]

Hi - I've almost given up on pump by today.
You will see for other posts that the last 2 weeks have been difficult to say the least. Temporary boluses of 170% the norm and higher at completely random times. I had blood tests and stool sample on Tuesday. Been on phone to DSN and insisted on seeing her yesterday. I've tried virgin sites for cannula in my buttock and new insulin vials. They downloaded my pump data and can make no sense of things. Bloods had come back and they were clear but she spotted something from May tests !! - apparently IGA raised (?) so more blood tests and now waiting for some immuglobin results which apparently relates to the gut? I have had sporadic diorahea for 2 weeks also. Does anyone have any experience of things going this bad for this length of time? She tells me that she will order some steel cannulas when she gets bak from leave in 2 weeks but I'm really worried as I'm due to go to Greece in less than 2 weeks myself. She is unwilling to consider (or rather Medtrnoic are) that the pump could be faulty - its not giving any warming messages.

I don't knew where to turn really. Any thoughts / observations welcome.

 

[Mileana]

Hey Riri


It sounds like the tests they would do if they suspect coeliac disease (body attacking gluten and messing up your gut in the process).

http://americanceliac.org/celiac-disease/diagnosis/

http://www.coeliac.org.uk/coeliac-disea ... ac-disease

I am not a medic, and I have just been doing a tiny bit of googling, and also was through the same tests a year ago.

While tests are ongoing, it's important to stay on regular diet, but if they conclude this is what it is, the the treatment is a bit annoying, but simple. Avoid gluten.

I would ring them up and ask if this is what they're looking for, or what it is - you deserve to know.

I can speculate that if you have an inflammation-like reaction going on in your gut, that your body reacts as if it was an infection. This should pass again.

I don't want to upset you or anything, so please do get in touch with them and ask what the tests are for, and what they have so far concluded. It's about you after all.

 

[Riri]

Thanks Mileana, I will phone them today as the results should be back. I did google IGA too, but I was a bit confused because I'm almost 100% sure that my levels were slightly elavated rather than deficient. But, as you say, we're not doctors so I need to speak to them. Thanks again for you answer.
Personally, do you think that if there is a gut problem such as coeliac, do you think blood sugars could be random (rather than high all the time). My DSN almost dismissed an infection or something of that nature as she reckons that my blood sugars would always be high. I don't tend to agree because if my stomach is reacting at certain times to things and calmer at other times then maybe my blood sugars are following this pattern?

 

[Mileana]

I would think so, it probably depends how bad the damage to your gut is at the time. But if we imagine 'some damage' making the lining sort of have 'holes' in it and munch away at the tiny folds in your gut, it's going to make the absorbtion of nutritients harder, probably sugar included. But then the inflammatory hormone response of your body could mess that up too. I think that 'random' is probably spot on, heh.

I hope that until you have been diagnosed properly if that is the case, that you can hang in there.

Perhaps even if it's a bit of a downer to have yet another auto-immune thing going on, knowing that at some point it's likely to be 'fixed' and things going back to normal, can help get through this rough patch?

Good luck with it.

 

[Riri]

All I want is an answer and for it to be fixed - I will adjust life accordingly then.
At the moment I feel as though the DSN and doctors feel as though it's something that will pass - maybe its because i feel so down and want results that it's making me a bit p....d off with everyone. My poor husband is all I can say - he helps/offers advice and all I seem to do is shoot him down in flames - I don't mean to.

 

[stoney]

Hi Riri

I am trying to think back when my son James was diagnosed with coeliac, as far as I can remember it didn't seem to affect this BG's and his hbA1c has always been 7.4 and it never changed, even to this day. The only symptoms he had was loss of weight, smelly poo's and stomach cramps and to confirm coeliacs he had to have a biopsy and was told in the meantime to carry on eating gluten as they would not be able to get a positive diagnosis if he had stopped.

Hope this information can be of some help.

Yvonne

 

[Riri]

Thanks Yvonne.. Interesting that James didnt have a problem with high blood sugars at the time or since - ill be chasing them up for results very soon. Lets hope they can sort me out soon.

 

[Robinredbreast]

Hi - I've almost given up on pump by today.
You will see for other posts that the last 2 weeks have been difficult to say the least. Temporary boluses of 170% the norm and higher at completely random times. I had blood tests and stool sample on Tuesday. Been on phone to DSN and insisted on seeing her yesterday. I've tried virgin sites for cannula in my buttock and new insulin vials. They downloaded my pump data and can make no sense of things. Bloods had come back and they were clear but she spotted something from May tests !! - apparently IGA raised (?) so more blood tests and now waiting for some immuglobin results which apparently relates to the gut? I have had sporadic diorahea for 2 weeks also. Does anyone have any experience of things going this bad for this length of time? She tells me that she will order some steel cannulas when she gets bak from leave in 2 weeks but I'm really worried as I'm due to go to Greece in less than 2 weeks myself. She is unwilling to consider (or rather Medtrnoic are) that the pump could be faulty - its not giving any warming messages.

I don't knew where to turn really. Any thoughts / observations welcome.

Hi I'm not on a pump, but could be in the future. I am still under investigation for coeliac disease and any gut symptoms can cause eratic BS. I hope someone comes along with some help and advice, it sounds a nightmare best wishes RRB

 

[Riri]

Best luck to you too. Have you been undergoing tests long if you don't mind me asking? Also, how erratic are your bloods and how long have they been playing up? Thanks

 

[iHs]

Hi - I've almost given up on pump by today.
You will see for other posts that the last 2 weeks have been difficult to say the least. Temporary boluses of 170% the norm and higher at completely random times. I had blood tests and stool sample on Tuesday. Been on phone to DSN and insisted on seeing her yesterday. I've tried virgin sites for cannula in my buttock and new insulin vials. They downloaded my pump data and can make no sense of things. Bloods had come back and they were clear but she spotted something from May tests !! - apparently IGA raised (?) so more blood tests and now waiting for some immuglobin results which apparently relates to the gut? I have had sporadic diorahea for 2 weeks also. Does anyone have any experience of things going this bad for this length of time? She tells me that she will order some steel cannulas when she gets bak from leave in 2 weeks but I'm really worried as I'm due to go to Greece in less than 2 weeks myself. She is unwilling to consider (or rather Medtrnoic are) that the pump could be faulty - its not giving any warming messages.

I don't knew where to turn really. Any thoughts / observations welcome.

Hi Riri
I try to vary a bit where I put my infusion sets into... If I use my backside... insulin is absorbed a bit slower than my tummy.. My legs are about the same as my backside. You may well have to adjust your basal rates and your carb ratio to suit how the insulin is being absorbed. There is for some people the build up of dodgy areas where no type of set can really be used. Ive got this on one side of my tummy about 2" below the naval. So its just not worth the agro I get from fighting really high bg levels and ending up juggling between the pump and using an insulin pen. This might be the same for you too and that the high bg levels are not just down to you having problems with your guts but also the infusion set and where you have put it on your body. Have you tried to do some hourly fasting for a length of time so that you can adjust your basals to an okish level? They might be different when using your tummy to how they need to be when going elsewhere with a set. Although Ive said what I have to Stoney... doing some degree of basal testing by doing bg tests does help to determine background needs and then one can go from there on how they adjust their insulin to their bg levels.

 

[CarbsRok]

Riri,
what sets are you using?
I had trouble very like yours and what it boiled down to was the cannula type and length.
Once I changed over to an 8mm steel cannula all was and is fine.

Why can't you ring medtronic and ask them to send some sample cannulas for you to try?

 

[Robinredbreast]

Best luck to you too. Have you been undergoing tests long if you don't mind me asking? Also, how erratic are your bloods and how long have they been playing up? Thanks

I have had lots of tests Riri including blood tests (the latest one, on Wednesday was for Thyroid) with lots of eratic BS since about March onwards but this was due to other things going on, but the BS are still eratic, this is why a pump has been suggestive. The 1st part of my coeliac bloodtest was negative, the 2nd part high/positive, but the DTC consultant didn't perform a biopsy at the time, which my dr asked for, and now I have to have it again with the biopsy, but I'm having the sedation again. Gastritis was shown up during the endoscopy and my dr upped my Omperzaole to 40grms per day. There are many gut problems that you could have but they dont all affect diabetes.
Good luck and I hope you get some help and good advice with the pump. You never know, I might be asking for pump advice later in the year RRB ps I orginally thought I had an ulcer.

 

[Riri]

Thanks for last 2 posts.
Ulcer - yes that's on my list of possibilities too.
Sets - I use the silouhettes so the flexible cannula. My DSN has suggested that we go with the steel ones (think she said to try Sure T). I didn't know I could order a sample direct. I'm going to do this as my nurse is on a/l for 2 weeks after tomorrow). I'll probably e-mail her now to get advice on the tubing and lenth.

 

[Riri]

Many to ask Carb Rocks - how do you insert them - manually? I currently use the sil serter for the silouhettes.

 

[iHs]

If you cant get on with the steel needle sets, then take the pump off and go back to injections for a while until you get a proper diagnosis for your gut troubles. You'll then see how well your bg levels are using injections to how they are with using a pump and then go from there on what you decide to do..........

I would be inclined to ask Medtronic to send you samples of 6mm and 8mm steel needle sets and get tubing long enough so that you can use your tummy, legs and backside. Steel needle sets are much easier to prime as you do it before putting them in......... Inserting them is easy as you just push them in like using an insulin pen and remove the adhesive paper before you do it........ To take them out is another matter as the adhesive sticks really really well so spraying with LiftPlus enables them to come out by gently lifting set adhesive back from the edges to the centre where the needl e is and then a little lift up pulls the needle out without any bleeding.........

 

[Riri]

Lovely thanks IHS. I'll do as you suggest and order 6mm and 8mm. I currently have tubing length of 60cm with silouhettes and that's plenty long enough so I'll stick with that

 

[Riri]

Ps - I was taken off the pens because of erratic levels !!! High and low!

 

[CarbsRok]

Many to ask Carb Rocks - how do you insert them - manually? I currently use the sil serter for the silouhettes.

HI Riri,
I use the contact D cannulas which as far as I know are the same as the sure T's.
All I do is push them in manually. Painless is the name of the game. Just remember you need to change a steel cannula every two days.
Removal I just peel around the edges gently then pull upwards. Again no problem.
The sil serter might also be part of your problem. I know Jopar manually inserts hers and has no problem.

 

[Eva9]

Ps - I was taken off the pens because of erratic levels !!! High and low!

I've been on insulin for about 35 years now. My blood sugars have NEVER been stabilized and doctors always say I must be doing something wrong. I've been advised to go on the pump "it will be wonderful" so I'm on a waiting list for 2 years now. Some days I feel I'd love to be on it other days no as I feel I still have that bit of control as to when I do the injecting. The last 2 weeks I've had brilliant tests but I knew they wouldn't last and are back this week in the 15 range again even though I'm cycling to and from work. Heading off to a pilates class now to see if that will help and also to strenghen my back.