T1D, antibodies killing thyroxine and insulin not just islets

[Blaiser]

Hi,
I have been T1D for the last 7 years, im 28 now.
I have always been fit and healthy as alot of T1d's are.
i have some very major strugles comming my way and need some help.
I have NEVER had keytones even with bgl of over 56 when i was first diagnosed(survived thanks to google)
my control is decent with between mid 7's and 8's as usual (could improve)
I now have antibodies not only killing my isletts redering me type one but also my thyroid.
but now.... i have antibodies kill both the insulin i inject and also the thyroxine im taking. i am getting more insulin resistant( getting fatter due to having more insulin and having no energy due to the thyroxine getting slaughtered.
this is bloody anoying and today got told that it would only get worse and there is nothing i can do.
metphorman cant be given or similar due to me having a 6x normal lactic acid response and putting me at highest risk of lacticacidosis.
seems like everything is broken and unable to be fixed......and yes i understand that diet will help... but it will not stop the increase of antibodies at the rate they are comming out.
im a banker and have a very stress full job, im sure that isnt helping.
Are there any other type ones like me who can lend some advice. remember i was fit exercising 8 hours a week with perfect diet when the resistance started to really take hold, has only gotten worse since then.

 

[catapillar]

I'm a big fan of doctor Google too. And because it sounds so rubbish & ive not heard of it before, I had to google it. One of the first hits is someone who was successfully treated with immuno-suppressants - http://www.ncbi.nlm.nih.gov/pubmed/19125765 - is that something that could be considered for you?

Were you seeing a specialist doctor with experience in anti-insulin anti-bodies? Because I suspect it's quite unusual so it might be worth trying to seek out a specialist who might be able to explore options other than accept it will just get worse.

Sorry I can't offer any practical tips, just best wishes.

 

[tim2000s]

Hi @Blaiser, welcome to the forum. I presume, based on your post, that your consultant told you it is the antibodies that attacked your beta cells that are attacking your thyroid and insulin? From what I've read of pubmed, the antibodies that attack the beta cells are different to those that attack exogenous insulin. Even then, the cases of people developing insulin allergies where insulin antibodies are created, are:

a) Incredibly rare with the human analogue insulins
b) Highly selective

You can get tested for insulin antibodies, but equally changing insulin would normally result in a positive response due to the selective nature of antibodies. Both of these should be discussed with your consultant and should have been tried?

From your post, the other thing that I notice is that you state you have a very stressful job, which is a good indicator of a predisposition to requiring additional insulin - stress causes a cortisol release that induces glucagon and therefore causes your liver to produce additional glucose. This leads to a need for more insulin which in turn can drive getting fat. It's a key driver of getting fat, not only in t1s but non-Ds too.

However you look at it, you seem to have a very overactive immune system, which must be hard work to live with. Has anyone looked at dealing with this, or further tests in that department?

Sorry I can't be much help!

 

[Blaiser]

Hi @Blaiser, welcome to the forum. I presume, based on your post, that your consultant told you it is the antibodies that attacked your beta cells that are attacking your thyroid and insulin? From what I've read of pubmed, the antibodies that attack the beta cells are different to those that attack exogenous insulin. Even then, the cases of people developing insulin allergies where insulin antibodies are created, are:

a) Incredibly rare with the human analogue insulins
b) Highly selective

You can get tested for insulin antibodies, but equally changing insulin would normally result in a positive response due to the selective nature of antibodies. Both of these should be discussed with your consultant and should have been tried?

From your post, the other thing that I notice is that you state you have a very stressful job, which is a good indicator of a predisposition to requiring additional insulin - stress causes a cortisol release that induces glucagon and therefore causes your liver to produce additional glucose. This leads to a need for more insulin which in turn can drive getting fat. It's a key driver of getting fat, not only in t1s but non-Ds too.

However you look at it, you seem to have a very overactive immune system, which must be hard work to live with. Has anyone looked at dealing with this, or further tests in that department?

Sorry I can't be much help!

I have been dealing with my states head endocrinologist and although he seems very rude he just tells it as it is.
dude to the rareness of this condition i was also scanned for brain tumors on my pituitary gland, none were found but doesn't mean there isn't one. (thats one possible reason or all the problems)
I also thinks it is strange that no matter how high i get i still do not ever get keytones? also something these"specialists" cant explain.
i feel like your right and that stress and cortisole might be a contributing factor thats the main reason i stopped lifting weights(also shown to increase those lvls) didnt make a difference really other then i wasnt exercising also made hardly any change. how ever im still in the same job and maybe its the problem....whats more stressful this job or no money and no job.
i also get massive subcutaneous sists from injections sites (i understand thats common though?)
thanks for the reply guys

 

[Nayera2003]

Hello there thank you for posting this. I know you needed help but you also helped , at least me. About 6 months ago my doctor told me from the analysis that I have antibodies. Now I started taking insuline , novo rapid and luntus my body does not react to it the right way. My blood sugar goes UP when taking insulin instead of DOWN. 2 days ago I had fasting blood sugar 13.8 and I gave the 3 units correction said by my doctor and it went to 22.7 without eating or drinking which I know isn't the right thing that insulin supposed to do. Thank you so much. Best wishes , T1d

 

[tim2000s]

Have you both @Blaiser and @Nayera2003 tried different analogue insulins, NPH, Porcine or Bovine insulin? From what I've read of this, if your body attacks certain insulins, it doesn't necessarily attack all, and this might give you temporary relief.

 

[Juicyj]

Managing your current situation may help you more, so firstly what insulin are you on, if this is causing you issues then as Tim has said try another basal, I didn't get on with levemir or lantus and was becoming more resistant so switched to Tresiba which was much more effective. I also have an underactive thyroid and take thyroxine, I get a blood test every 6 months to check this, I have found if it's slightly off the boil it affects my insulin requirements so the 2 seem to play off each other, getting the right dose of thyroxine is crucial.

As your in a stressful job can you take up something like yoga or a meditation class to help relax you, both and great at taking time out from stress, or another form of less strenuous exercise, so walks in the country or get out on a bike ? Try and find an outlet that helps you stop thinking about work.

It's always work in progress and crumbs Google is a nightmare !!

 

[Blaiser]

i will be very upset if this is a possible solution and it has not been given as an option. i will also be thrilled if it fixes the problem, the doctor, endo and educator didnt say or surgest it, it seem slike a viable option to me and lets face it, at this stage ill try anything. Getting out of bed is horrendous in the morning and getting harder by the day novo gives me the sists i wonder if that is an idication that its the insulin im reacting too? i get a welt about the size of an Australian 20c piece each needle. i apreciate all the posts and ideas also. Thnaks guys. i forget im not alone somtimes.

 

[catapillar]

The cyst reaction to novorapid also sounds pretty unusual - it could be you're allergic to it (or whatever it is suspended in) & if you are having an allergic reaction that would be shining a light on the insulin for you're immune system to attack. So worth trying different insulins because either you won't have an allergic reaction to them so the immune response will be less or with completely different insulin (bovine etc) your immune system might not even notice it's there, at least for a while. Good luck.

 

[Blaiser]

The cyst reaction to novorapid also sounds pretty unusual - it could be you're allergic to it (or whatever it is suspended in) & if you are having an allergic reaction that would be shining a light on the insulin for you're immune system to attack. So worth trying different insulins because either you won't have an allergic reaction to them so the immune response will be less or with completely different insulin (bovine etc) your immune system might not even notice it's there, at least for a while. Good luck.

how Offten does everyone else get sists? so this bovine is it the same curve as novo or similar?

 

[Engineer88]

Never had a cyst, been diabetic 28 years. Sounds a lot like you've become allergic as above. I had issues with novorapid in that it took 2 hours to work for me so i switched insulin. might help, defo worth a try!

 

[catapillar]

Only 5 years for me, but I've never had a cyst from injecting. If you get them every time you use your novorapid I don't think that is a common reaction.

I don't know about the action of the alternative insulins, but I reckon @tim2000s might possibly have further info, or a handy graph.

 

[tim2000s]

If you've been using Novorapid and getting cysts, then do look at other insulins. I've been on Novorapid for about 15 years and not once had a cyst from using it.

Your alternatives are Humalog (Insulin Lispro) and Apidra (Insulin glulisine) and their action profiles are very similar to one another. So much so that all the graphs simply show a single curve for all three rapid acting insulins.

With regard to other insulins, the graph below shows a few:

For the fastish acting ones, if none of the black analogues are suitable, you could try the "Regular", which was had brand names such as Actrapid and Humulin R. It's slightly slower than the Rapids, but perfectly usable. There are also different "speeds" of bovine and porcine. @CarbsRok probably has more idea on that than I do, as she uses porcine.

 

[Nayera2003]

@tim2000s no I have not. I get one type of insulin novo rapid me and my sister use it. Thanks for help in my next appointment 4th of May I will ask my doctor about that ! Have a nice day.

 

[JohnEGreen]

@Blaiser has any one suggested
plasmapheresis – where your blood is circulated through a machine that removes the plasma containing some of the harmful antibodies
or intravenous immunoglobulin therapy – injections of normal immunoglobulin, taken from healthy donated blood, that temporarily change the way your immune system operates

I personally don't care for plasmapherisis but it does help IVIG that is intravenous immunoglobulin I have found effective but sadly neither is a permanent solution and have to be repeated.

 

[Blaiser]

@Blaiser has any one suggested
plasmapheresis – where your blood is circulated through a machine that removes the plasma containing some of the harmful antibodies
or intravenous immunoglobulin therapy – injections of normal immunoglobulin, taken from healthy donated blood, that temporarily change the way your immune system operates

I personally don't care for plasmapherisis but it does help IVIG that is intravenous immunoglobulin I have found effective but sadly neither is a permanent solution and have to be repeated.

You suffer the same as me? over active autoimmune system killing everything?

 

[Blaiser]

Thanks so much for all the help guys... im feeling like novo might be more of the problem then the specialist have thought. its such a long winded pain in the **** to get medical appointments here.

 

[Blaiser]

i Have spoken to the doctor, they will not change insulin based on my symptoms, claim that all insulin is synthesized as human insulin and are attacked all the same if antibodies are present. they are now claiming a pump is the only way to go and that that will reduce my insulin amounts and hence drop some weight. i have bought a rowing machine and going to get on that 4 nights a week. i have been told not to exercise but if im going to die ill be ******** if im going to tip up fat. im not actually very fat, but for me i certainly am. i am now going through all the ******** to get a pump, i am also seeking a new endocrinologist.

 

[Juicyj]

Hey @Blaiser Interested to know why you have been told not to exercise, I haven't heard any type 1's being given that advice before, exercise improves insulin sensitivity so it's vital for maintaining good BG control. I am also not sure why you are not being given the option to change insulin unless it's a cost issue ? Considering the fact you are actively seeking to improve your control, then changing your basal would be a positive suggestion.

I have found from past experience that I have to push and push to make things happen, requires some resilience but it's your health that counts.

 

[pukeko21]

Yeah the exercise avoidance sounds unusual, but it might have been recommended to avoid a high BS going even higher. Health professionals can give strange advice sometimes. I heard of a newly diagnosed type one female being told to eat 'no more than 2 pieces of fruit per day'; which is ridiculous. Keep pushing for the change in insulin! Tell them it is very important to you and ask why it is not an option if the cost is similar.
Your post makes interesting reading. My normally stable bs are all over the place at the moment. I too take novorapid and insulatard and leverthyroxine. Recent stable nighttime bs have ended up very high in the am: 26. Novorapid to correct at twice normal dose has had little or no effect.