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I have often wondered if I really have rh as I rairly drop low but I do spike high with carbs and it may be I just miss the lows or my low setting is higher than others,need to get m new libre sensor sorted

Well done Kaz so happy you got the libre. Have you ever had your b12 and folate checked as if they are low this can lead to nurological type symptoms. Just a thought xx

Thanks as of now it's still 1.5 below I think xx

Do you mind me asking where your function doctor is Dante? Thanks

Agreed I told her there were lots of us being diagnosed now and she should come here for support. Fingers crossed. Night xx

I was in Lush in Telford and I overhead a lady talking about collapsing with hypos and it happening all the time and how she has a rare disorder so I couldn't help myself but say 'me too'. This lady,s consultant has told her there are only 27 RHers in the country and she has to travel from...

It was the sensor! You are right should just follow my body and how I feel. Thanks Nosher you too xx

Hi all. Got myself some strips today and guess what the sensor is reading 1.5-2 lower than my freestyle lite showing me as having low glucose when I don't! I called Abbott and left a voicemail message for a call back. Will update in due course. X

I have run out of sticks which is maddening! I'll get some tomorrow and check. I am definitely brewing a cold and we did walk 3 miles but I was 6.4 before leaving and stable and had peanut butter so no way did I expect such a quick drop. I really need to get a handle on this. When I got back I...

Put a new sensor in today. Showed 6.4 then went for a walk and dropped to 3.1. Now I can't get it back up. Any one else experienced this with the sensors?

Hope you are all better now Kaz x

This one is better http://rarediseases.org/rare-diseases/pmm2-cdg/

https://ghr.nlm.nih.gov/condition/pmm2-congenital-disorder-of-glycosylation Having read this I didn't have these issues as a child so I don't know. As hoped I may be just a carrier

Thank you all. I'm not too upset about it as I'm not even sure I have the condition yet but I have a gene variance which shows it is in my genome. I have printed the results and sent them to the consultant and I'm sure he will see me soon. I did a genome test through 23andnme and it came up...

I'm doing good thanks. Are you ok? I have found out today that I have a genetically inherited condition in my genome which is pmm2 -cdg It is pretty scary so I'm hoping I don't have it properly as it can be fatal but I have the variant so it might be that I am a carrier. It is a congenital...

Wow Derek you will notice such a difference when you get treated but you do need co factors which are k2 and magnesium. I know you have an issue with blood clotting from previous posts and take warfarin am I right? You will need to talk to your consultant to see if they are happy with you taking...

http://www.ncbi.nlm.nih.gov/m/pubmed/27094871/

http://mobile.nutraingredients.com/Research/Vitamin-K-supplements-may-improve-glucose-metabolism-insulin-sensitivity-Review

Sorry to hear you are feeling rubbish Kaz I think stress has an effect but I would have thought it would raise cortisol and so blood sugar? Have you started having any herbal tea or eating more of anything that reduces bg? Such as cinnamon? Xx

Good to get it checked Derek at least you can rule it out if not. Could it also be poor circulation? Although you do exercise a lot I know. I'm cold all the time too. Blankets are my friend xx