please read **have so many questions - New Type 1 + Hyperthyroid

[summerytomorrow]

Hi, just diagnosed last week with type 1 after being hyperthyroid for 8 years (without medication for past 5). i am very grateful to the Higher Powers that Be to still be alive right now. am 39, married, great job (that don't want to loose) but very poor health. did not take care of myself well in the last few years even though my thyroid was in a remission, now am back on the meds for it as well as insulin... but thru Divine Grace, am still alive and have learned my lesson to not take the gift of life for granted !! truely appreciate every day that is given now and do not feel depressed about my state even though I look and feel like an anorexic junkie !!

got out of hospital on saturday after 5 days in with dka. had not eaten properly for many days even before going in so lost 10 kgs very fast !! am down to 45 kg right now when my ideal is 60 kg ! thought i had a stomach bug like many others, but turned out was diabetes and had been coming on for a while just didn't pay attention properly to the thirst etc

work requires me to travel to hot climates (hence thinking the thirst was related to that) and have about 6 weeks before next assignment ... am looking for some advice how to deal with the weight gain, strength gain, get to feeling a bit more normal and not like i'm on a rocking boat all the time ...

as of right now i am able to move my limbs again (was not able to move my feet or arms for days while in hospital from all the ivs), can climb stairs again and have my appetite back in a big way 🙂

take lantus (10) at 11am and novorapid (4) with food 3 x a day... they said i was sensitive to the insulin so started me off with this . my side effects so far are headaches and a lot of belching after taking the insulin... i take the novorapid 15 min before meals but it still makes me belch a lot and sometimes feel a burning pain in my left side about an hour after eating. any suggestions ???

have been experimenting by increasing the amount to 5 or 6 with my meals if i feel hungrier (so can eat a bit more carb) but have been yo-yo ing so much in the beginning that just in the last few days has it gotten down to a consistent 8 before and after meals... the carb counting and all is still very new to me, am learning about it online right now.

am planning on gettng the ragnar hanas book suggested by northerner and others until then still have so many questions don't know where to start !!!

firstly, does anyone remember having super sore arms after any arterial lines/iv's in the hospital ? is it normal for it to ache this long ? had a bad experience in that they moved it around while it was still in my arm bc they could not get any blood out, felt like someone was sawing my arm off !! so it is really aching. anyone else have a recovery time for this ?? have googled it but no revelations as yet. so far have soaked them in hot water with epsom salts, and it gives temporary relief.

also, my ankles and feet are still slightly numb and heavy... ankles slightly swollen ... is that normal too ?? (they were swollen to elephant size in the hospital while getting fluids) any exercises anyone can suggest for helping with this ??

secondly, when one feels hungry between lunch and dinner (lunch at 2:30 and dinner at 8), one eats a low carb snack but this sometimes makes my before dinner reading high, so should i take more insulin and eat something proper so don't feel as hungry ?? also, should it be the same dose, 4 or less ??

i am vegetarian, eat eggs and milk, so my diet has increased in the amount of eggs and beans and pulses to up the protein and down the carbs, was surprised to find out one can still have things like chappattis and potatoes... indian food is a favourite. are there any people that like to eat indian on here ??
do you have any advice on how to manage that ??

am sticking to pretty simple regimented meals and meal times for a while to get the hang of this and let my body get the hang of things too ... have noticed the difference taking insulin that I don't feel as tired anymore, my body is able to utilise the food i am eating now for energy (no more fruity sugary cravings with high bs levels)

thirdly, they only had 5mm needles for the pens at the hospital, i have no fat on my body right now ... sometimes get blood when i inject myself ... should i get shorter needles from my gp or is that normal??

enough about me, tell me your experience/advice please ! so glad to be able to ask these questions here.

 

[Robin]

Hi, summery tomorrow, and welcome to the forum.Lovely name, just when I'm feeling autumn is upon us! I was diagnosed Type 1 when I was 50, and there are quite a few of us 'late developers' on the forum. I can't answer all of your questions, hopfeully members with relevant expertise will pick them off one by one for you.
I think your approach is good, keep things simple til you get the hang of things. It's like learning a language, if you manage to get a grasp of basic grammar and vocabulary after a few weeks, you can then move on gradually to the A level syllabus! Once you see a pattern emerging, you will know how much insulin you need for a given number of carbs, and this will help you work out how much insulin you need for a snack.

 

[summerytomorrow]

some answers have come already ...

Hi Robin, thanks for replying. 🙂 !

Just spoke to my gp so the needle thing is sorted and contacted a diabetic dietitician about my meals and questions so hopefully will get an answer to that too soon.

my patience meter needs to be increased for everything especially my body, am going to try some yoga and light exercises first anyways sounds like the right place to start after the recent trauma.

lots of learning to do still

 

[KookyCat]

Hi Summerytomorrow
Another late bloomer, last year aged 40, DKA, BMI under 16 and a considerable amount of muscle loss. On the arterial line front it was about three weeks of pain for me but I got cellulitis so watch out for the areas becoming firm and hot and an increase in pain, if that happens pop to the Doctor because it's a bit on the painful side 😱. I struggled quite a lot building muscle and putting on weight and honestly it was 12 months before I was back up to full capacity (although 18 months on I'm still a bit shy of my fighting weight). The good news is it was about 12 weeks before I felt a good bit better, although I was off work for six months and then made redundant so the stress probably had an impact too. Of course it depends how far the muscle wasting went for you, hopefully it stopped short of the level mine got to. The best news is you'll feel a bit better every day though and you can't ask for more than that.

My digestive system objected a bit too but I think it might have been the volume of food I was inhaling rather than the insulin. I ate like a pig for a good few months but then my body was clearly giddy with enthusiasm for food because it had been starving for quite a while. Between meals wise I went for slow release carb like hummus and carrot mostly but to be honest if I needed food in between I ate it and then corrected at lunch or dinner. I'm sensitive to insulin too so overlapping doses takes a bit of practice, personally I wouldn't worry too much about really fine control until the hunger subsides a bit (it does eventually 🙂)

 

[AlisonM]

Re your job. If you can get more time before having to travel, you should, you're clearly recovering but have some distance still to go. It will take a bit of time for you to regain your strength and get the hang of the insulin, especially if you're insulin sensitive.

If you have to go somewhere and it's hot your insulin needs may drop for a few days and then climb again and that will probably be an added complication you could well do without at the moment. There is also the fact that you may require medical support in a hurry over the first few months to sort out any health issues that arise as you learn how the diabetes works in you. If you do need to travel you'll need the best health insurance you can get, a letter from your doctor/consultant explaining you're diabetic and need to have your kit with you. You'll need a cool bag to store the insulin when travelling and something to keep sufficient kit in a small bag to cover the entire journey and enough supplies to cover the whole trip if possible.

All the above is complex, stressful and can be hard work in the early days especially. You need to give yourself time.

I hope all that helps.

 

[trophywench]

I echo what everyone else has said - diabetes is different for every person with it so no-one can say 'do this or that and all will be brilliant' cos it probably won't, or if it does work, it won't work forever because our needs for insulin vary not only with the weather, but with all sorts of everything - and then we have to adapt to it.

Yes you ARE still learning - indeed you are! - but to be honest - the learning doesn't stop. Or at least, I've been T1 for over 40 years and I learn something new every day. Pumper Sue on here has lived with it for 50 years+ - and she says exactly the same.

And that's how it SHOULD be!

But - lots of these things that now seem complicated, when you look back in 12 months, over your first year - lots of things, you will do without thinking by then.

Meanwhile - your meter is your best mate so make sure you are friends with it and have shedloads of test strips to hand !

 

[Northerner]

I echo what trophywench says, it's very much about the experience as well as the facts and guides, do's and don'ts. It sounds like you've got off to a really good start, but it is a complex condition to deal with at times, and some things will be totally puzzling even years down the line. But, things WILL get better as you work at it, start to spot those patterns, know how your favourite foods affect you, what activities send you low (gardening for me!), how to keep yourself safe and always carry hypo treatment with you (again, you will find your favourite and most effective - mine is jelly babies).

At the moment, things may be a bit up and down as many people experience a 'honeymoon' phase soon after diagnosis, when your pancreas might kick back into life occasionally and throw off your expectations and calculations. Keep in close contact with your team (and us!), and test, test, test to build up that picture of what diabetes means in your particular case.

Just another thing, as you say you hadn't been particularly well for some time before whatever it was that pushed your pancreas over the edge. As well as the DKA, this might be a reason why you are finding it hard now, even though you are eating well and taking insulin. Are you on any other medication? I was put on aspirin, clopidogrel, omeprazole, beta-blockers, statins, two types of vitamin B tablets, ramipril and some others that have now been lost in the mist of time. A lot of them actually made me feel more ill, generally nauseous and with some gastric upset and muscle pain. It took many months to find out the culprits and cut them out or change their type. If you are on other new medication besides insulin, this may be contributing to how you feel now.

Good luck, let us know how we can help and we will try our best 🙂

 

[TheClockworkDodo]

Hello and welcome from another late bloomer - I was 44 when I was diagnosed, also underweight, also rushed to hospital with DKA, and also sensitive to insulin so on low doses.

As everyone has said, keep testing so that you see what your bgl is doing and build up a picture of what works for you. You will need to learn how to adjust the Novorapid so it covers what you want to eat, and possibly also the Lantus if you have lots of low - or high - readings, so do ask your diabetes team about that if you're having trouble working it out. You may need a half unit pen for the Novorapid so you can have 4.5 units if you're finding 4 is too little and 5 is too much. But yes, keeping to basic food for now is sensible!

You can inject extra Novorapid for snacks if like me you have a little and often type of diet, but it's probably not advisable to do this until you've got the hang of it, and not without discussing it with your diabetes team, because Novorapid lasts for about 4 hours so you may end up injecting while your bgl is still on its way down and that could be dangerous. A few high readings in the meanwhile shouldn't be a big problem.

The insulin you have out of the fridge needs to be kept below a certain temperature - Novorapid is 30 degrees and Lantus 25, so you will need something to keep it in when travelling abroad. You can get wallets from Frio - http://friouk.com/1119 - which you soak in cold water and then put the insulin pens in to keep cool. The work better than a coolbag and are easier to carry around when you're just travelling with a couple of pens.

It might be worth contacting any airline you're travelling with before your trips abroad to let them know you are diabetic and will need to travel with insulin, needles, packets of glucose etc!

I got some pain from one of the ivs in hospital, but I put that down to allergic reaction (I have loads of intolerances). It wore off pretty quickly, within a few days, I think. I've also had some problems with acid reflux since being diabetic - if you keep getting the burning pain & burping, ask your GP about that. I take Ranitidine (aka Zantac) when it gets bad, and that helps. It may just be indigestion though if you are eating a lot to make up for all the weight you lost with DKA - I struggled to get my weight up to normal again too, so know how that feels.

 

[HOBIE]

Get your name down for a pump ! If I don't want to eat. I don't & not many people cant understand how I adore to miss lunch . On fixed insulin I had to have 50grms of carbs 4 times a day in the early days. I used to have 6pts of milk a day (strong bones & teeth). If you travel a lot you can put temp basils on when in flight etc. Good luck 🙂

 

[Robin]

As I understand it, it's very difficult as an adult to get put forward for a pump until you've gone down the injection route, fully grasped it, lived with it a while, and then decided it's not working for you, so that's maybe a little while off yet. I'm on Novorapid and Lantus, and I can eat at times to suit myself, and miss meals if I want to.

 

[summerytomorrow]

thanks for that kookycat, alison, robin, jenny, juliet,northerner, hobie appreciate your experience and words

have gotten in contact with my diabetics team, there was and probably still is so much imbalance in my body its definitely absurd to think one can fix it immediately and feel on top of it all but IT IS getting better everyday and one is so so lucky !! thanks for that reminder that they are there too for one to stay in contact with.

one has a great support team at home too which helps more than any insulin to bring things down, the stress and worry and they keep one PosiTive and grateful !

interesting about the pump. am very very interested in natural remedies to control the blood sugars too, expressed this to my endocrine doctor who is overseeing the diabetes as well and she was supportive of that for me. i had kept my thyroid in check with these things previously so have been using some green tea, vinegar, fenugreek seeds, almonds in the morning on empty stomach, breathing exercises and some yoga... feel loads better already from last week ... my arms feel less sore, my body less crampy ... who knows, if had been doing it in a disciplined way and keeping the Higher forces in mind always might have avoided this situation but instead I overloaded my poor pancreas by trying to make it in the world forgetting about Divine !

lol am starting to Preach now 🙂... busy days ahead, wish everyone the best ! thanks for the words !

 

[trophywench]

Well nothing herbal or natural has ever been discovered, that actually addresses the root result of Type 1 - ie dead beta cells = lack of insulin.

I'm not saying natural - or spiritual - 'stuff' doesn't make people feel better, sometimes - because there's no doubt that they can do that - but there is absolutely no way to replace the actual insulin without adding it from outside - and without insulin - we can't even take the first breath of air when we're born and continue to take them until we take the last one when we shuffle off this mortal coil.

So don't be tempted to test out the theory that anything or anybody can take that added insulin's place.

It can't !