Consultant appointment

[AJLang]

At the appointment I presented the consultant with very detailed results with various lots of basal testing. She has said that there are no patterns showing in the results and she therefore can't make any suggestions for altering my insulin doses and has said to stay on 70% basal. I woke up at 3.3 this morning. The consultant has arranged cortisol, FSH and kidney/ electrolyte blood tests but expects them to be clear. She did write Hypos ++ on the blood testing form.

 

[Northerner]

Sounds pretty ineffectual Amanda Out of interest, do you have a single basal rate throughout the night?

 

[AJLang]

Hi Northerner

No the basal rate varies during the night because of the gastroparesis. Until recently it had worked very well but obviously is now reduced to 70%.

 

[Northerner]

Would it be possible to get a referral to a different consultant? I'm not very impressed with this one

 

[Pumper_Sue]

Perhaps go back to basics and have a low flat basal pattern day and night and reset your basals.
When things go t*ts up it's always best to start again completely from scratch.
Yes it's frustrating, but body needs do change and you have to react accordingly. IE, you need a lot less insulin in some places than others now.
My basals went haywire a while back so I just bought some sugar free jelly and spent a few days getting the basics right and tweaking as I went along.
My mornings still need a bit of work but the effort was worth while.

 

[AJLang]

IE, you need a lot less insulin in some places than others now.

Hi Sue

Unfortunately at the moment this isn't the case. There is no pattern to what the sugars are doing at different times. i.e. for the last four mornings I've had one go up quite a bit, one go down a bit (landing on a 7.2), one stay stable and one hypo - This is the problem that there is no pattern at anytime of day and that is based on lots of basal testing with hourly finger prick tests, eating similar foods when I do eat and doing similar things.

Alan from experience of mine and others she is the best consultant in the clinic!

 

[bev]

Hi Amanda,

Will the tests include one for coeliac? I know I keep going on about it but your sudden lows do seem to fit the profile!🙂Bev

 

[AJLang]

Hi Bev

Thanks very much. The consultant decided not to test for coeliac but as the blood test results that she did do have come back clear I'm going to change to a gluten-free diet for a while and see if that helps.

 

[Hanmillmum]

Hi Bev

Thanks very much. The consultant decided not to test for coeliac but as the blood test results that she did do have come back clear I'm going to change to a gluten-free diet for a while and see if that helps.

Hi,

Just as a caution, if you are going to go gluten-free as you think coeliacs is a possibility, you would need to do the whole hog and ensure there is no cross contamination in any food or equipment. It isn't easy and requires a whole different lifestyle unfortunately.

 

[AJLang]

Hi Hanmillmum

Thanks very much. I appreciate your message and have realised what a big step it is. It's scary! But I had a good chat with my mum and we decided that I've got to try it properly because if it works it could make such a difference to my life. I've joined the Coeliac Society to access their electronic food and drink list and will be dumping the Bassetts jelly babies when I start this on Sunday🙂

 

[bev]

Hi Hanmillmum

Thanks very much. I appreciate your message and have realised what a big step it is. It's scary! But I had a good chat with my mum and we decided that I've got to try it properly because if it works it could make such a difference to my life. I've joined the Coeliac Society to access their electronic food and drink list and will be dumping the Bassetts jelly babies when I start this on Sunday🙂

Hi Amanda,

I would advise not going down this road without an official diagnosis.🙂If you fast-forward five or ten years you may not be in a position to buy GF foods and if you then decided to go for a proper diagnosis there wouldnt be any evidence of damage as it would have rectified itself. I understand why you want to try it as you obviously just want to feel better - but it may not be a good idea long-term. GF food is expensive and to do it properly you have to change everything so it can be restrictive - so quite a big decision to make without a formal diagnosis and a big commitment too. I have heard of people who have tried changing diets and then needed to go back to GF foods to gain a proper diagnosis by biopsy and become very ill as they were even more sensitive to gluten than they had been before. I would personally push for another blood test and explain your reasons in detail for wanting it - you can get a false negative from blood tests - the only way to make a formal diagnosis is to have a biopsy.🙂Bev

 

[Hanmillmum]

Hi Hanmillmum

Thanks very much. I appreciate your message and have realised what a big step it is. It's scary! But I had a good chat with my mum and we decided that I've got to try it properly because if it works it could make such a difference to my life. I've joined the Coeliac Society to access their electronic food and drink list and will be dumping the Bassetts jelly babies when I start this on Sunday🙂

Best of luck for going down this route 🙂.

We went down the biopsy route for my daughter after a positive blood result, and despite this being off the scale we were told dx could only be made with the biopsy as you can get both false positives and negatives for bloods

I personally approached my own GP thereafter to be tested since I had symptoms of IBS for several years without any investigations and there can be a strong familial link, and they were happy to oblige however, my bloods were fine. I think if you feel there is a possibility this may be a problem for you there would be no shame in asking and getting a proper dx though, tc 🙂

 

[trophywench]

I'm going to ask my GP to do the coeliac blood test for me Amanda, it's not expensive and it would certainly explain a few things for me - what does a D consultant REALLY know about coeliac I asked myself, does it even fall under Endocrinology? No it jolly well doesn't - because it's Gastroenterology!

My D consultant is lovely, but his Registrar is heaps better at Thyroid stuff than he is. He's pretty good at D too as it happens, just not quite so up on pumping is all. Each to their own speciality.

 

[Pumper_Sue]

I have had 2 blood tests in the last 6 years and also the biopsy. Last blood test was on the 14th of this month. They came back negative.
Slight problem is I have the rash associated with coeliac disease and am 100% improved in my over all health. In fact I can not believe how well I now feel.
I have my old bounce back and my so called friends keep telling me to have a sarni full of gluten to shut me up 😱
My GP basically said sod the results you obviously have a massive problem with gluten. I will prescribe the gluten free food for you without question as a medical necessary.