Will I finally get an answer ?

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EmmaL76

Well-Known Member
Relationship to Diabetes
Type 1.5 LADA
Well I’m hoping so… after over a year of being fobbed off with no actual official diagnosis, I have an appointment today with a professor of diabetes and metabolic disorders. I’m nervous but hoping I can find a way forward that is manageable.
 
God luck! Let us know how you get on.
 
Hopefully if you cry it will be from relief and not more frustration, fingers crossed for the first option. Good luck x
 
Good luck you Have waited a long time hope you get all the answers you need
 
Crying (if that is how you feel) will emphasize how frustrating this is for you and the consultant/professor needs to know that, so don't feel that you need to suppress it. If he/she doesn't manage to give you an answer today, it will hopefully make them realise how this is impacting your life and encourage him/her to look more closely at your situation and do more tests to get to the bottom of it
Good luck!
 
Okay so just finished my zoom call. So much to get my head around. He really seemed to know his stuff. The biggest revelation was the fact that he thinks my case points to MODY. He has suggested testing for this, along with a couple of different medications which I’d never heard of. He said metformin would never of worked for me which it didn’t and looking at the way my BGs behave that I should be on insulin but maybe not the ones I’m currently being prescribed. He also said that I should consider a pump ? I had never thought of this being something I would need or even be eligible for, but he says he thinks it would benefit me greatly. Not sure how I feel about that, but I got the feeling that he was saying my beta cell dysfunction makes it very difficult to manage in other ways. He’s going to write to my doctors with his finding and a 3 point action plan, 1, new meds, 2, different insulin, 3, a pump. Not sure how receptive my team will be to this, I have a feeling I have another long battle ahead, but for now I’m going to tell myself that I will be eating again by Christmas !
 
Which insulins is he recommending?

I imagine a pump would help with the very small and variable doses you may need.

There was supposed to be a new initiative of testing for MODY being rolled out so you might be lucky and get to take advantage of that if your GP is prepared to consider and look into it. Many people struggle to get MODY testing because it has been very expensive but I think this new initiative was tackling that.
 
Ok so bear with me, I was scribbling stuff down and had no idea of spellings. The 3 drugs he wanted to trial me on were cita something and Lino something or gliclozade (I definitely know I havnt spelt that right) insulin was fiasp? And tresiba ? I have no idea how my doctors will respond to his suggestion or even if it will be possible, and I would imagine a pump would be way off. I asked if he could take over my care, but unfortunately as hes in Liverpool and I am not he said patients are finding it more and more difficult to do this so he suggests my endo takes it from here. I did roll my eyes a little as he was supposed to see me in March for a review and I’ve just been told that that my next appointment is next April and that’s with the dietician and I’m not down for a review. !!😡
Edit.. by March i meant last March !
 
Gliclazide stimulates the pancreas to produce more insulin. I am surprised they didn't try you on that initially. If your pancreas doesn't respond to Gliclazide and bring your levels down then usually it indicates that you aren't able to produce enough insulin yourself so exogenous insulin would be necessary.
Which insulins were you on before? Fiasp can be tricky and is unpredictable sometimes which might not be helpful for you but is a little quicker than Novo(not so)Rapid. Personally I wouldn't thank anyone for prescribing me Tresiba but it does work for some people.
Not sure what the two other drugs are that he mentioned, but hopefully others will have some input.
 
Yes novorapid and Semglee glargine was what I was originally prescribed but haven't used it for a while. To be honest I haven't had much help at all from my DN, it’s always been said that somethings not adding up, but it’s never looked into. The fact that I have antigad but no other antibodies, I’ve had issues with blood sugar for 20 odd years that kept coming and going apparently is common in MODY, plus not responding well to treatments. Thing is though my parents don’t have it? It’s genetic, but I suppose it has to start from somewhere. I have 4 kids, I’m worried if this is the case that I’ve passed on my mutated genes to them 50% chance apparently. As if there isn’t enough to worry about. !! Thanks for talking to me xx
 
rebrascora said:
Fiasp can be tricky and is unpredictable sometimes
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Fiasp is not tricky if you understand it.

Initially, I had some challenges but once I knew that the speed at which is works is dependent upon my blood sugar level, things became much easier.
I have been using it for two or three years and would hate to revert to NovoSluggish now I understand FIasp..
 
Have you already had a C Peptide test @EmmaL76 ? Often they do that and the antibodies tests prior to the MODY testing (because those two tests are cheaper and can show them whether it’s worthwhile testing for MODY). Did your specialist hazard a guess at what type of MODY you might have?
 
Yes I had c peptide done last year. The results were good insulin secretion/possible resistance. He did say there were a few strains of MODY but didn’t say which one he thought I may be. I’d always thought insulin resistance meant I must be type 2 ? I feel my struggle now will be getting the testing.
 
EmmaL76 said:
Yes I had c peptide done last year. The results were good insulin secretion/possible resistance. He did say there were a few strains of MODY but didn’t say which one he thought I may be. I’d always thought insulin resistance meant I must be type 2 ? I feel my struggle now will be getting the testing.
Click to expand...

You could look through the various types on the Exeter site, if you’re interested (scroll down to the types of MODY)

https://www.diabetesgenes.org/what-is-mody/

Yes, the testing is expensive - hundreds of pounds, I think. That’s why they like to do some initial tests eg the antibodies and C Peptide, and do some screening questions eg about family history, etc, before deciding whether to proceed to the MODY testing.
 
Inka said:
You could look through the various types on the Exeter site, if you’re interested (scroll down to the types of MODY)

https://www.diabetesgenes.org/what-is-mody/

Yes, the testing is expensive - hundreds of pounds, I think. That’s why they like to do some initial tests eg the antibodies and C Peptide, and do some screening questions eg about family history, etc, before deciding whether to proceed to the MODY testing.
Click to expand...
Thankyou so much inka x
 
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