Hyper and hypo but normal readings??? MODY

[Kaz333666999]

Hi all
Been poorly for 6 weeks now, but have had blips like this increasingly over last year. Nhs wait times here are months and months so thought I'd see if anyone had answers. I am having problems with extreme tiredness, which is teamed with the usual typical hypo or hyper symptoms, shaky, thirsty, needing loo, etc etc. I feel and look like I'm one way or the other, food helps and stodgy meal with usual insulin usually helps a lot. However my sugars remain good and stable, when i feel really wretched I test every 20 minutes or so thinking perhaps Im crashing fast and just happened to catch it in the middle of a curve. Ive even tested on two meters incase it's broken. Has anyone else experienced anything like this? Thanks for any advice!

 

[catherinecherub]

Hi @Kaz333666999 and welcome to the forum.
I really do not know if this is solely a problem for MODY people or if a Type1 might have solution.
I will tag @kesun as she has MODY and might be able to help you.
Hope you get some answers.

 

[Kaz333666999]

Hi @Kaz333666999 and welcome to the forum.
I really do not know if this is solely a problem for MODY people or if a Type1 might have solution.
I will tag @kesun as she has MODY and might be able to help you.
Hope you get some answers.

Thankyou so much for responding, it's got me very puzzled!

 

[catherinecherub]

I'm bumping this post up in the hope that someone can reassure the OP.

 

[Kristin251]

Yes I have. Feeling unbalanced when BS Is good. Recently I found very small sized sneak meals I can take less insulin and stay steady without those feelings. In my mind, taking insulin at the beginning of a meal instead of following the normal thing of following Bs creates a weird reaction . So the less insulin I take the better I feele

 

[Kaz333666999]

Hi thanks for posting. i have only ever taken insulin with meals, as it's only food that makes my bs go up? Snacks help a bit, and at the moment i feel like i am having to do that much more, but my body definitely seems to need the energy from a decent sized carb heavy meal, and only reacts properly to that?

 

[PatsyB]

Normally feeltired if levels are high like this am I just knew it would be high as slept very deep last nigfht got up to 9.2...

 

[Kaz333666999]

Hi, still feeling poorly
Anyone else come across this?
Been doing research and wondering if adrenal/thyroid could cause problems? Seems to all be very linked?

 

[kesun]

I will tag @kesun as she has MODY and might be able to help you.

Hi @Kaz333666999 sorry I took a while to respond. I don't have personal experience of this, but I do know that certain types of MODY tend to be very sensitive to small insulin doses. I suggest you ask your GP for a referral back to your consultant - unless you have a consultant appointment coming up.

If you do suspect it's something other than a diabetes-related problem, you'll probably need to convince your GP: it's a common experience that when you have one diagnosed chronic condition doctors are inclined to ascribe every symptom to it.

Kate

 

[Kaz333666999]

Thanks so much for responding. Doc has tried all sorts of blood tests but everything coming back normal so far. I have an endocrine referral, but theres an 8 month waiting list for 'urgent' referrals! I've come to the conclusion that i am going to have to do some extra legwork to get to the bottom of it, and possibly suggest my own ideas to the docs, so any advice very gratefully received! I have also had to gradually increase my insulin at breakfast and lunch to keep it stable, now up to double my usual doses, dont know if that rings any bells with anyone?
Thanks again for your help, karen.

 

[AdamAdam]

One possibility is anxiety or panic attack.

Or hypothyroidism or maybe both meters you used were inaccurate. What meters did you use? And when you mean 'normal' what numbers specifically?

Another possibility is you lowered your blood sugar target to quickly and you feel hypo at very high levels yet?

There are 3 possible reasons why you increased your insulin doses.

1. Increase in carbohydrate consumption
2. Your insulin is damaged
3. Menstrual cycle
4. Infection

 

[Kaz333666999]

Hi thanks for the sugestions AdamAdam. Anxiety symptoms definitely kicked in in the first week of being poorly (i dont normally suffer from it, but i think thats what was happening, heart rate 130, and bp high. ) Doc put me on beta blockers for a few weeks, seems to have calmed down now. Triggered i think by physical problems swallowing (not tonselitis, but seeing ent consultant for this anyway soon, as have also had no voice for weeks). I know thyroid often affects diabetics, but my TSH test was normal. I used a brand new glucomen tester and an older onetouch ultra 2 (and look after my test strips), so cant work this one out. I'm always very controlled and stable ?!

 

[Totto]

Ask the consultant to examine your thyroid. It sound similar to what I experienced with goitre. Have you had a full set of thyroid tests, including antibodies? And what were your results?

 

[Kaz333666999]

Thanks Totto. Unfortunately doc won't go further than TSH test, especially as it came back normal. i am on the endocrine/diabetic consultants 'urgent' list, but people on the same list are still waiting from last August!
I'm gutted as I can't drive or go out. Hubbie is having to be cinderella () but work are being brilliant, and let me nap or rest everyday, but the whole thing is definitely improved by food. Did you find this with your thyroid issues? Thanks again!

 

[Totto]

LCHF certainly improved my energy.

As for the usefulness or uselessness of the TSH test, it will never pick up secondary hypothyroidism so you need to get the free hormones tested.

If you can wait until you see the consultant, fine, you might get lucky. If not, pm me.

 

[Kaz333666999]

Hi Totto
Thanks for all your advice and your time.
We're thinking about paying for the initial consultation, as i couldnt wait months to see if it was thyroid, just a gamble to waste money if its not (and will have to go NHS after, so not sure what it could acheive). Also still not sure if this is the right direction to plough into, or if it's just something diabetic.