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Type 1 Honeymoon Period... Very vague to me!

Woollyfuller

Woollyfuller

Member
Messages
22
Location
Salisbury
Type of diabetes
Type 1
Treatment type
Insulin
Hi all,


I was diagnosed Type 1 in April 2014, so have been a diabetic for about 8 months - even though its been a while I cannot get my head around it all and still think I was misdiagnosed as it happened all very quickly and feels like I was pushed to take insulin and the information and advice I get from the consultants is always vague and taking insulin always makes me feel ******.. The medical profession seem to know "very" little about this in my eyes and seem scared to consider any contradicting opinion of mine or even able to provide decent advice other than don't smoke, exercise and eat healthy (which I did before I was diagnosed) and take your insulin.


I want to challenge the diagnosis (after 8 months I am still not convinced) and they say I am Honeymooning which sounds like a generic answer to nothing to me - therefore I take a small dose of fast acting insulin with food (5units) and shots of slow acting morning and night (10units)... This never changes and I often ask do I actually need this?


How on earth are you supposed to know what level of insulin to take, I hear on here all the time about carb counting and reducing dosages with exercise and alcohol - but this makes no sense to me and I ask constantly HOW DO YOU KNOW?!?! How will I know when I am out of the Honeymoon period if I ever am??


My bloods are nearly always between 4 and 7, sometimes I see a spike, but surely normal people have sugar spikes as well??.. So, blood test seems to stay the same so not really a good guide.


Spent hours researching and reading stuff, but its all so bloody vague and could apply or not..


Has anyone been misdiagnosed or struggled with what a honeymoon period is and how long etc??
 
many on here have experienced a honeymoon period and some still going through it. I too at the start was querying my diagnosis which during the first 12 months needed little to no insulin during some weeks. After 18 months I learned more, my body became more predictable and became much easier. I remember during my diagnosis they used certain calculations to estimate my basal/bolus insulin ratios which quickly became a problem for me as I was taking way too much for my needs. With what you are taking and staying between 4-7 then I think you really need insulin. The honeymoon phase can cause a temp start up of your body producing some insulin. How long for is indeed very wooly answer as can vary from weeks, months and years. Only by testing, keeping a record and looking for patterns will you learn. Has your dsn/consultant discussed a dafne course. This teaches you to do basal testing (much needed) have a google, and as well as carb counting adjusting bolus for stress/illness\ activity etc. Have a look around here, any questions just post.
 
Hi Woollyfuller.
When I was diagnosed with BG at 29! but I was mis-diagnosed as type 2. With diet and a few type 2 med my diabetes improved so much I had to almost stop taking all medications. I thought I had it all sorted, hmmmm. Then about 1.5 years later my BG started to rise and rise, more tablets were added to no avail. Eventually on referral to the clinic, blood tests revealed that I was most definitely type 1 (all type 1 markers were screaming positive). What I had experienced was a very long honeymoon period. It seems to be the older you are when diagnosed the longer the honeymoon period.
You have very good control at the moment so well done. I suspect that your insulin requirements will creep up over time. Good control like you have now may well slow that creeping process down.
Unfortunately everyone's diabetes is different; we all respond differently to different foods, exercise and medication. I suspect that is why you are finding so much conflicting information. Please stick with it, I am still very much on a learning curve (1.5 yrs on insulin and have just left the honeymoon) but have received excellent advice and support on this forum.
Best of luck
Flakey
 
Hi.
If you are maintaining levels at between 4 and 7 on 20 units long acting and 15 units rapid acting then yes you definitely need the insulin. Also, you are managing very well given you feel like you don't understand!

Ask for a second opinion though to put your mind at ease. They can test for the antibodies that cause type 1.
 
I might add, I was diagnosed in June and take less insulin than yourself. I definitely am type 1 as have all the markers.

I feel like I have a good understand of it all so please ask any / all your questions on this forum as it is great!
 
Emmotha said:
Hi.
If you are maintaining levels at between 4 and 7 on 20 units long acting and 15 units rapid acting then yes you definitely need the insulin. Also, you are managing very well given you feel like you don't understand!
Click to expand...


My thoughts entirely Emmotha.

As for carb counting, you can ask to go on a course such as DAFNE, it teaches this and many other aspects of type 1 diabetes management, there's an on-line course which is based around the DAFNE teachings and you can find it in the following:

http://www.bdec-e-learning.com/
 
Hi wollyfuller

I was diagnosed T2 15months ago then T1 honeymoon / LADA a year ago. I am 57. BMI 22. My consultant said to me a year ago that I would be on insulin within weeks... I am still not on insulin or any meds and have good BG level control (hba1c 5.1%). It varies so much from person to person. My BG levels are so good that my diabetes nurse wanted to take me off her diabetic register and cancel my BG testing strip prescription!!!!. I had to persuade my gp otherwise.

My point being. I know I am diabetic, simply because I can not eat anything carby. I control my BG levels through carb reduction.... You are diabetic because you obviously need to inject insulin, if you stopped injecting your BG levels would rise very quickly.

Lots of us on this forum have found that lowering our carb intake reduces our dependency on insulin (or, in my case eliminates it...for the short term).

I started to find out about carbs and how they effected me by eating to my meter. This means eating, then testing 1hr and 2hrs after eating. You soon find out how carbs affect you. If you do this, and you are not already low carbing, you might well find you have to reduce your insulin requirement because of your low carb intake.

I have been following Dr Bernstein's diabetic solution book (around £5 on kindle). I great / interesting read. I recommend it. There is a chapter on the honeymoon period, where he says it is normally short, but with good BG control can be extended, which is what I am doing.

Keep reading these forum posts. I have learned much, much more here than from my diabetic hospital clinic.
 
Thanks guys, some good advice here.

I will investigate the DAFNE course and DR Bernsteins book, and keep going I suppose...

Emmotha - One if the things that was odd about my case was I presented no Antibodies in my blood tests, I had Key-tones but not the other. I was told by someone that to be type 1 you should have the antibodies - this is one of the reasons why I question my diagnosis... Do you know if this is normal? Should I push this issue?
 
Woollyfuller said:
Thanks guys, some good advice here.

I will investigate the DAFNE course and DR Bernsteins book, and keep going I suppose...

Emmotha - One if the things that was odd about my case was I presented no Antibodies in my blood tests, I had Key-tones but not the other. I was told by someone that to be type 1 you should have the antibodies - this is one of the reasons why I question my diagnosis... Do you know if this is normal? Should I push this issue?
Click to expand...
Not always true I don't think, apparently only 90% type 1s have it, although can't remember where I read that.
You will definitely either be type 1 or type 2, and usually type 2s don't get ketones.

May I ask, are you keen for it not to be true? If you can accept it you might be able to understand it all a bit more.
 
It can be a huge shock being diagnosed with type 1, a lifetime of injections and finger pricking, hypos,hypers etc. Some may find it hard to come to terms with, especially the teenagers and younger adults :(

Take good care of yourself and good luck

RRB :)
 
20 units long acting and 15 units rapid acting is quite a substantial insulin dose. If you didn't need that, your body would have made that very clear to you. Just for comparison, I'm a LADA in my honeymoon (it comes on slow, but it sure comes on), and I'm currently taking 8 units total daily dose (5 basal and 3 bolus). Without it, my sugars go up up up, even tho I very very low carb. Between 4 and 7 sounds just ace, what most of us are aiming for. So, as others have said, you're in clover.

Theoretically you could experiment with cutting your intake back, but it wouldn't be good for you and it might take some days to get back to a good level again. Probably not a good idea.

I'd add to what Ian said, Yes Dr B's basic approach is blindingly obviously correct. Just read the man, or the bits available on the web. ( http://www.diabetes-book.com/readit.shtml And esp ch 7, The Laws of Small Numbers. )

However, low carb doesn't have to be as low or as regimented as Dr B advocates (30g carb a day in strict allocation. In my own case, Dr B's regime has basically put me off food. I have great difficulty in eating enough now because I've come to see food as a threat. That sucks and I have to change it.) You can also low carb on 50g a day, or you can work it out by trial and error. The point is just that the lower the carb intake, the easier flat blood sugars are. Flat blood sugars are the Holy Grail: the secret of Diabetic Happiness.

Have a look at Jenny Ruhl's nutritional calculator here and experiment with various low-carb levels. See what might suit you and try something out.

http://www.phlaunt.com/diabetes/33614154.php

You do have some control as a diabetic. You have three things to play with:

Insulin
Your carb intake, &
Exercise.

Manipulating those three things will take your blood sugars up or down. (Also weight loss, if you were overweight in the first place, will make you more responsive to insulin, your own or injected.) So there's a lot you can do.

Lucy
 
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Thanks all!

Emmotha - I think my biggest problem is in 8 months I haven't met anyone with Type 1, so I am kind of relying on the web to get a better understanding (where I am sure a good hour with someone who's had it for years would probably answer a lot of questions). For example, I didn't even know my current insulin dosage was quite high! Why am I being told I am in a honeymoon period by the docs when my insulin intake is actually quite high - you can see why I get confused! I know where your going with your question, am I in a bit of denial? I was a lot at first and still am to a lesser degree now, but I have given it 8 months and some of these feelings are still there chipping away!

Thanks,
 
Woollyfuller - I can't offer much advice as I was only diagnosed a few weeks ago, but reading THINK LIKE A PANCREAS by Gary Scheiner has given me so much useful information. It's really easy to read, I'd highly recommend it if you haven't seen it yet.
 
I was lucky in a sense that my friend was diagnosed 6 months ahead of me and someone at work has had it his whole life so has helped. It deffo has helped to talk. You are in the right place on the forum.

You're not on a lot more than me, and that may be because you eat more carbs. I rarely go over 60 and just started on 30.

Definitely don't be scared to ask ur doctor / clinic for more support, and also on here.

Having T1 is an inconvenience yes, but it shouldn't stop you living a happy, healthy life once you get your head around it
 
@Woollyfuller Just to reassure you, you aren't on a particularly high dosage of Insulin for a recently diagnosed diabetic. My total daily dosage when I was diagnosed was about 26u on twice daily. You are at 35 on MDI and have the added flexibility that this provides.

There are plenty of us on here with many years under our belts, and if you don't want to ask questions in public, feel free to start a private conversation and we'll respond. Up until I reduced my carb loading (from NICE standards to ~60g carbs per day) I was using more than twice your current amount. We've plenty of experience and are happy to help!
 
Hello @Woollyfuller

With the amount of insulin you are injecting you seem to be handling diabetes remarkably well. The odd spike is because your insulin bolus did not match the food intake. If you did reduce your meal injection you would soon see higher spikes. I certainly don't recommend cutting back insulin as you seem to be getting it right most of the time.
 
Woollyfuller said:
Thanks guys, some good advice here.

I will investigate the DAFNE course and DR Bernsteins book, and keep going I suppose...

Emmotha - One if the things that was odd about my case was I presented no Antibodies in my blood tests, I had Key-tones but not the other. I was told by someone that to be type 1 you should have the antibodies - this is one of the reasons why I question my diagnosis... Do you know if this is normal? Should I push this issue?
Click to expand...

Honestly, no one said to me anything about a honeymoon period or antibodies in a blood test,:wideyed: that was back in 1989. Anyone experience this or not experienced this years ago? would be interesting to
find out o_O

Best wishes RRB
 
Robinredbreast said:
Honestly, no one said to me anything about a honeymoon period or antibodies in a blood test,:wideyed: that was back in 1989. Anyone experience this or not experienced this years ago? would be interesting to
Click to expand...


Don't recollect it being called the Honeymoon Period but do remember the DSN explaining the principles behind it when my insulin doses were up and down.
 
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