Gluten free toast no spike

Long and tiring!
Having a quiet day, browsing, watching footie!

If the toast doesn't spike you, then, happy days!

 

Hi Emma,

Sounds great. Was it white gluten free bread? My Mum buys gluten free bread, will give it a try.

Hope you guys are all good? x

 

I'm ok too thanks. My Endocrinologist has removed my diabetes diagnosis and says I now just have RH. Thinks I'm doing good with my diet and has discharged me. I've reduced my carbs, but not very low carb and it seems to be working ok at the minute. With very low carb I produced ketones and they make me feel rotten - extremely thirsty, very tired and generally unwell. When I re-introduced a few carbs these symptoms went away and I had more energy. I have to be careful to stick to routine and watch out if I do extra activity but overall I've seen an improvement. Are you still getting good results with very low carb? Any more news on whether you've got Hughes Syndrome? xx

 

That's good that you have at last got a diagnosis.
Don't get that he has discharged you! You should get another appointment, just in case.
What has your endo said about what you should do regarding RH?
Aren't you going to have tests?

 

Really pleased to hear you're doing well Emma. Hope you get on ok next week. Keep us posted.

My Endo doesn't think I need further tests as I have a RH diagnosis. He said the diet I was following was good and to continue experimenting with foods. He mentioned a couple of different medications (one was metformin and I can't remember the other) but doesn't feel I need them at this stage. He said I'll probably never completely eliminate my symptoms, but as you age your body naturally produces less insulin and therefore the RH should improve.

 

I can go back and see him any time I want. Unfortunately now I have a diagnosis, the insurance company won't cover it so it'll be at my cost. My GP could always do a referral on the NHS to see the same consultant if I need further tests in the future.

 

Hey, well done for getting the diagnosis!

Make sure you get a copy of the consultant letter to your gp.
Sometimes they send you a copy, sometimes they don't - although if it was private you definitely should get it.
Mine never send me a copy (nhs), and there is one particular letter i really want to get a copy of, but i forgot to ask for it last time i saw the nurse.

I really recommend you keep a folder on this.
Every appt, every test, print outs of the results.

It is amazing how easy it is to forget details.

Am well chuffed you have a diagnosis!

 

Thanks Brun!

I have a copy of all the consultants letters and test results to keep. My 24 hour urine collection was perfectly normal (right in the middle of the range for everything they tested) and so was the 24 hour ECG, which is good.

It was a relief to know I'm not diabetic (although I am pre-diabetic). He said we'll let my hba1c determine when I reach that stage and I'm hoping that will be some time yet! Of course, I still wish I didn't have RH and don't understand how it suddenly became so problematic but I guess I may never know.

I'll just keep plodding on, make the most of the good days and take it easy on the bad.

Thanks again to you all for your advice. I was a little overwhelmed and lost for a while (still am some days!), but knowing you guys are there to offer advice and support makes it seem a whole lot easier. Not sure where I'd be without you all xx

 

Ok that's good!

Why won't your insurance cover a blood glucose disorder?
Sorry for being nosey! Just find that weird! (not like us!)
Get your GP on board, it will benefit you in the long run!
Ask your GP to try you on sitagliptin, as this really does help with control.
I have read and seen a video about the drug in America and my endo has had talks with the pharmaceutical company about tests. It has helped his other RH patients!
Also try and get your GP to put you on the diabetic register and then get free prescriptions etc. But you have to persuade him/her like I did mine.
That will help with your testing and experimenting, with using so many testing strips for your monitor. Be cheeky, like I was! It works!

 

Like diabetes, RH isn't covered by the policy. They only cover to the point of diagnosis. We get the cover through my husbands work and it probably isn't the most comprehensive cover. I'm so pleased we had it though as I was seen within 2 weeks and have a diagnosis. The appointment with the nhs Endo was a 4 month wait and I was discharged after the first consultation and a simple thyroid test!

I spoke to my Endo about Sitagliptin but he said he would be very reluctant to put me on it. He explained the way it works and said that as a result it reduces your appetite. I'm very close to being under weight after losing over a stone since March and therefore can't afford to lose any more.

 

Yes, I now understand his reluctance to prescribing you it now!

Except, that since you posted, I can't find anything about that in the pharmaceutical companies tests, trials and patients notes, for side effects and weight loss and appetite loss.

I do know that because of our diet it's natural to lose weight, but that can be balanced by eating more protein and full fat. I eat a lot less since being prescribed but that's my choice and being in ketosis.

I could understand about metformin, but that is known to be a appetite suppressant and should not be prescribed in my opinion for RH ers because our hba1c and blood glucose levels are normal, and eat to be well.

Read up on Sitagliptin, I wish I could link the video but it was put on another thread.

 

Thanks Nosher. I can't remember exactly what he said about Sitagliptin but I think it slows down digestion and therefore slows down the release of glucose, which helps to prevent the blood glucose spike. As a result though, you feel fuller for longer and don't need to eat as much. Apologies if I have that wrong, but I think that was the gist of it.

I don't want to take any med at the minute if I can help it. I tend to get side effects from everything I take so it puts me off! I really don't think I need it. My fasting bg is mostly low to mid 5's (down from high 5's) and my 2 hour post meal readings are mostly 6's or 5's with the odd 7. I do sometimes spike higher than I'd like at 1 hour, but I am still experimenting so I can't get it right every time!

Thanks to you giving me a little "talking to" a while ago, I feel much less anxious about it all. I still get stressed when I get confusing results, but I try to tell myself that some days will be like that and tomorrow will be better! x

 

Hi Kaz,
Don't you believe it Kaz, I am 76 and produce a lot of insulin when I have carbs!
atb
Derek

 

That's ok, Kat.
Just trying to help.
If not taking meds is great, so if your happy, then I'm happy.

Yes, sitagliptin does reduce the spike and on my last OGTT, my spike was just over 8! When it has always been over twelve (ish).

Glad your fasting levels have reached normal levels, now you can keep them there!
Keep it up!