Another Newbie thats confused!

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Deepss

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Relationship to Diabetes
Type 1
Hi,
Prob going over old ground with some of you guys but got a few questions regarding the honeymoon period.
I am 38 and was first diagnosed with type 2 last nov, I wasnt reponding to the the drugs they gave me. My blood sugars were running in the late 20s to 30s for months. Usual symptoms (thirst/trips to the toilet) but felt fine. Changed my diet radically,was 15st and dropped to 11.5st. I didnt have much help from the doctors with what anything actually meant. Chance meeting with a nurse friend who suggested getting my Ketones tested. Found some online,checked myself and then went back to the docs where all hell broke loose. More tests later and it turns out I have type 1.
From Feb this year,started insulin,(lantis and apidra) and managed to get things kinda under control,seemed to sit around the 10s, but then I took a herbal tablet and my blood sugars dropped. They went down to the 3s. Sinse then my bloods have stabalised at around the 6s. Keep in regular touch with my really cool diabetic nurses and the decision was made to lower the amounts of insulin. First the Apidra went and then the Lantis.
I currently take nothing,not even the herbal stuff and find that I can eat what I like and it have no drastic effect. I dont push it though and am still very carefull with my food in-take. My nurses are really baffled,Ive had CT scans,various meetings with doctors and have been referred to see an endocrinologist. (at one point they though I might of had the big C but scans/tests came back neg)
I know its not some kinda miracle,I know what symptoms to look out for and check my bloods religiously and I understand that eventually I will be insulin dependent but was wondering how long this honeymoon period can last for? Right now,all is well but its like waiting for the inevitable and gets kinda draining. Im always on edge,checking my bloods etc and in a crazy way would prefer to be through this period.
Any experiences/advice would be greatly received!
Many thanks
 
Hi Deepss, welcome to the forum 🙂 Very sorry to hear about the problems you have had getting diagnosed, it does sound like you are a particularly puzzling case! But you are not alone, I have read several stories from people here who have undergone a similar experience, and some who still are, so hopeflly they will be able to share their experiences with you. The general public's view, and unfortunately that of some health care professionals, is that diabetes is a simple disease that can be categorised into one of two types where the diagnosis criteria is usually just age. But there are an increasing number of cases appearing of late-onset type 1 diabetes, also known as LADA (Latent Autoimmune Diabetes in Adults) or Type 1.5. As these cases are relatively rare, many GPs miss them entirely and assume from someone's age and build that they are Type 2.

I was similar, but undiagnosed for about two years before I was struck with a virus that finally scuppered my pancreas as my immune system kicked in to try and defend me from it. I rapidly deteriorated and ended up in A&E with DKA (diabetic ketoacidosis). I've been treated as a Type 1 since then (3 years ago, aged 49) and been on insulin. On the whole I have excellent control, HbA1c of 5.4% and my consultant thinks my pancreas may have recovered a little and could be producing some insulin as my basal insulin (lantus) is so low. I was initially on 20 units of lantus and have been as low as 3. My novorapid requirements fell at the same time, about 6-8 months after diagnosis to about 50% of what it had been originally, although I've never been able to do without it entirely. As I said though, there are some of our members who need tiny amounts of insulin or none at all.

Am I still in honeymoon to some extent? Possibly, but I try not to think too much about it. Diabetes is something you need to deal with every day, as it's hard to predict too far into the future what might change. I'd say, stick to your healthy ways and this way you will be supporting your system in the best possible way and may not need insulin for quite some time to come. Have you had the GAD antibody and C-peptide tests? Very well done on your terrifc weight loss!

Please feel free to ask any questions - nothing is considered 'silly' here!
 
Thanks for the quick reply!!
I know Ive had a gad test and thats what I was told determined I was type 1. I know its puzzled the hospital/diabetic center but I have been told that my pancreas is now functioning normally. Which is great....for now. But I keep getting told about this honeymoon period.
I was in Thailand when the symptoms came on,just happened one day,woke up and was really thirsty needed the toilet loads. I put it down to the food/environment but it stayed like that 5 months,it did my head in. It exhausted me.
My weight loss was through diet change and exercise but then I lost too much and was told that my muscle mass was being effected. I am now back to just under 13 stone and happy with that.
Guess its just a waiting game and see what happens!!
Many thanks
 
Sounds to me like you were probably exercising whilst your levels were too high which can lead to the body using fat stores as fuel. I've also heard it said that, by giving insulin early enough, sometimes this helps the pancreas recover some function and this seems to be what has happened to you - long may it last! 🙂

As I said, I started getting symptoms long before being diagnosed but put them down to other things. I lost two stone in the two years prior to diagnosis without any good explanation (I wasn't over weight to start with and wasn't dieting or anything), and 17 pounds in the three days immediately prior! I'm a runner and they think that, although my insulin production was declining the running was helping my use the unsulin efficiently. It's only in the absence of insulin that ketones become really dangerous as insulin is needed as part of the process in removing them safely from the body. Lokking back, I felt pretty terrible in the 6 months before being diagnosed, running my slowest ever half marathon three months before.

I would say that you need to be especially careful if you fall ill as this may 'set things off' again, so you need to be able to test your levels and ketone levels.
 
Hi Deepss. Welcome 🙂

A fascinating but clearly distressing course of events for you. I hope someone can give you some reassurance.

I think I left my honeymoon period a long long time ago 🙄

Rob
 
Thanks for the replies!!
Just had a read of that link and sounds very interesting. I have heaps of questions to ask the Endocrinolgist and LADA has just made it on the list. I did ask my diabetic nurse about type 1 1/2 and was told there was no such thing,'its either type 1 or type 2!'.....
Good to hook up with people on a forum who have experience and info!! (and theres me thinking it was down to a herbal tablet 🙂 )

Cheers guys
 
ahhhh. Bet she's one who tells patients diabetes is easy to sort out and control and to eat a shedload of carbohydrate at every given opportunity ...... 😱
 
Hi,
A quick up date with my Endocrinologist meeting.
Really disappointed with my meeting. Felt like I was being spoken to like a small,mentally retarded child at times. My father is Lebanese so am used to being around none native speaking english people so I say this with no offence to the guy,but it was tough going,he was an asian fella and I had trouble understanding him. But his thoughts were,
a) I am writing down the wrong results and not understanding them.
b) my blood/sugar monitors are broken and giving me false readings.
c) I am not being truthful.
He said its not possible to be type 1 and blood sugars to go down after being on heaps of insulin then coming off it,they should be going up. I told him I understand fully what my readings are and my 3,yes 3 monitors are working fine. I did a test while I was there and I was 4.7. My faith in the NHS has been tested since all this happened,its a shame as I know they do try to help. When I first found out,they were the only people I could talk to so I ended up looking forward to my next appointment and hanging on their every word.
So where from here? Well,gonna have another HBA1c test (had 1 a month ago so not sure how accurate this one will be?) and hopefully that will determine if Im going up or down without insulin. I feel fine,just gonna make the most of it while the ole pancreas is still putting out its stuff......unfortunatly,im under no illusion and eventually it will pack up and Im back on the 4 injections a day:(.....unless Im a miracle!!!!..lol🙂
 
You have every right to be disappointed as I do not think this person knows his stuff, from what you hav e told us. I have known of at least three other people who have related their stories here about how they were diagnosed Type 1 and were able to come off their insulin after a few months, so clearly it IS possible. I have also encountered consultants who have this manner of treating you like an imbecile, like anything you have to offer is worthless and that you should just accept their pronouncements. I no longer have any respect for any health care professional who is not prepared to listen, with sincerity and understanding and an open mind, to what I have to contribute.

He may not have encountered such a case as yours before, but that does not mean you are lying to him - how arrogant! I would go back to your GP and ask to be referred to a different consultant. Just the fact that he questioned your ability to use a meter suggests to me that he was out of his depth and trying to hide his inability to provide an answer behind insulting your intelligence.

You most definitely need a second opinion, don't accept an unsatisfactory explanation of your situation because it may affect the type of treatment you get should your circumstances change. Good luck, let us know how it goes! 🙂
 
Hey thanks for the support.
I am confused and not sure whats happening. I have spoken to my diabetic nurses about this Dr and they have said that Im not the only one and there are others who have had similar experiences. They have made me a new appointment with a different Endocrinologist. One thing they did say was that having another HBA1c test so soon after my last one,(may 26th) was kinda pointless and 3 months between tests was preferred. They said it would be better to have one 3 months after I came off the insulin. Is this correct?
I am very interested to find out more about the other type 1's that came off insulin. Do you know how it panned out for them? or how long they stayed off before having to go back to it? if at all?
Any info greatly appreciated....
Many Thanks
 
Good to hear you have another appt with a different endo 🙂

The HbA1c measures a (sort of ) average of your blood glucose levels over the 6-12 weeks (varies by person) prior to the blood being taken and is weighted towards the most recent weeks. So, a test taken now would most likely include a large element of your levels prior to you stopping insulin. Taking it at 3 months would probably give a better comparison of your 'before' and 'after' BG control.

I think that one of the people I mentioned is still pretty much in the same position as you - stopped their insulin and with no firm diagnosis. Others I know have been able to cut out the insulin when they are having an active day, otherwise the amounts needed have been so tiny that they have ended up on insulin pumps which can deliver much smaller quantities.

I hope you have better luck with the new endo - let us know how you go on! 🙂
 
Hi Deepss and a warm belated welcome to the forum.🙂
 
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