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Ella1

Type 1 teen - a rather unusual case...

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Ella1

Hello!

 

I'm doing some work on some Russian forum. There is a very specific case there. A teenager girl (15 yrs old) has abnormal BS. She was diagnosed with Type1 in March 1999. She was put on insulin. All this time they struggled with adjusting the doses. Eventually, after trial and error, they came to the conclusion, that she needs hardly any insulin during a day (nothing for food either)... BUT as soon as she goes to bed her readings reach the levels, which a glucometer can't even record - >29 mmol/l. As if she gets a huge counter-insular hormones reaction, which blocks actions of her own insulin (which presumably exists, since she doesn't need bolus or basal injections during a day). This rise in BS during her sleeping hours is accompanied by high ketones. She put on weight... Another thing is that she lives in a small town in Kazakhstan. The doctors in the capital are intrigued, but they can't give any solution. Her mother talked over the phone to the specialists in Moscow, but the reaction was rather worrying. It sounds that they totally ignore the fact that her BS are within 4.8-6mmol/l during the day (witout any extragenous insulin!!), and they suggest to put her on a bigger insulin dose, which she already had done in the past experiencing hypos and shockingly high rebounds of BS... So, her mother is a bit unsure whether it's worth taking her daughter to Moscow, as it would be steps backward rather than forward.

 

The Russian forum is for insulin-dependent diabetics, predominantly type 1. There was a suspicion that she could had been misdiagnosed, and she is a Type 2. I'm sure there should be a scientific group which might take interest in this unusual case.

 

My question is: Has anyone come across anything like this? Perhaps there are similar cases where growing teenagers get this hormonal disbalance.

 

Thank you in advance for your answers or suggestions

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DeusXM

I've heard that the hormones released during puberty can seriously affect blood sugar, and that those hormones tend to be released at night, so that does sort of explain the spiking, but it does seem very extreme - it's definitely an unusual case.

 

It could be a case of MODY (Mature-Onset Diabetes of the Young), but it sounds to me like she is experiencing a very extreme reaction to puberty hormones.

 

Although I'm not a doctor, I would have thought the most logical thing to do was for her to test her bg hourly during the day, to get a much more coherant picture of what happens to her bg, and when she goes to bed she should take a bolus dose to cover her initial spiking.

 

Another thing that's just sprung to mind is that it could be an unusual manifestation of the honeymoon period.

 

Ultimately though I'd recommend she goes to Moscow since she'll be seeing specialists who should eventually be able to help her. The fact that their initial advice seems a bit suspect is probably because they haven't had a chance to properly examine her so they've gone for bit of a fudge. If they get a proper chance to examine her case they should be able to be far more helpful.

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Ella1

DeusXM, thank you for a quick reply!

 

I also told her that this would be the best she could do at the moment. The other thing I forgot to mention is that the doc in Moscow was convinced that the girl secretly :rolleyes: injects bolus insulin during a day... hmmm "Ich don't sink so!" Her readings are

 

10:31 - 4,2 mmol/l

14:32 - 4,1 mmol/l

17:19 - 30,4 mmol/l, she had a nap, BS measured while she was asleep,

18:07 - 4,2 mmol/l, she was woken up 30 minutes ago, nothing was injected,

then she went to a bday party, ate there normally witout insulin

21:26 - 4,1 ììîëü, later went to sleep -

22:37 - 32,1 mmol/l, 20g honey+ 5 unit Humalog (to lower BS and to regill the liver glycogenl, otherwise she would have ketones. She calculates the dose using carb count + extra to reduce BS)

 

next day:

03:00 - 20,9 mmol/l, 4 unit Humalog + 2 unit Humulin R without honey,

06:56 - 16,1 mmol/l,

07:20 - 4,3 mmol/l, she woke up,

12:28 - 4,6 mmol/l,

13:35 - 4,2 mmol/l,

21:52 - 4,2 mmol/l

 

This is really really weird. I doubt that a 15 year old will manage her day time BG with such perfection, secretly from her parents. Plus it would be obvious, it's mega expensive over there.. The price is the same as anywhere else in the world. I just wonder how they manage to buy insulin with their wages... :confused: but it's another story..

 

Growth hormones are quite active at this age.

Her mother knows the condition inside out. But this is such a difficult case...

 

They need to find a good professional... very very good one.

 

I post it here, so others could see how complex and unique our bodies are. The weight to insulin ratio guidance - is just like an old-time concept of the Earth held up by four elephants or Atlas :D

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Ella1

argh!! typos again!

The sentence should say

22:37 - 32,1 mmol/l, 20g honey+ 5 unit Humalog (to lower BS and to refill the liver glycogen, otherwise she would have ketones. She calculates the dose using carb count + extra to reduce BS).

 

 

I thought it's important to clear this, as this is a technique which not many people know about

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DeusXM

The weight:insulin ratio rule isn't scientifically accurate, but it does at least give a ballpark figure, since it's assumed that people of similar weights will have similar metabolisms. Obviously it's not strictly true (and there's a whole load of other factors at work), but it's not a bad place to start.

 

As for the girl's readings...the fact that the normal readings never deviate more than 0.4mmol/l and she's almost always 4.2...call me suspicious, but that's the exact middle figure you should get from using Accutrend Control Solution 1. Jon's son pulled a similar stunt. I'm not saying that's the answer (since I don't know anything about her testing regime), but it does seem a little odd. When you mention how they have trouble affording insulin as well, that also makes me think that maybe she thinks she's protecting her parents from significant financial outlay...sorry if that seems really cynical but it IS a possibility.

 

If, however, we assume that there's a genuine problem, I think we can also rule out the honeymoon period since it simply doesn't give out those sorts of numbers.

 

Interesting technique you mentioned there too, about refilling the glycogen - I wasn't aware of that. Personally I'd query giving people with high bg more sugar since I'd assume that the glyco would refill anyway from the sheer volume of sugar in the blood (although I'm very possibly wrong). The main reason I'd query it is because she goes to bed at 32.1, and even with 5 units of humalog she's still at 16.1 the next morning - a significant drop, but clearly not enough.

 

However, obviously the bolus dose when she's high is the best workaround at the moment. Might be worth her going onto Novarapid - it's got a higher work rate than Humalog and lasts slightly longer too.

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Ella1

Harold, thank you very much! I'll look at it and try to post the question there.

 

DeusXM, thing is that her mother is on the case, and she is the one who does the blood sugar testing, so she would spot the glucometer setting, having said that I would make this suggestion to her (hope she wouldn't kick me in the face, she's pretty fed up now). When I first heard from her, her daughter was on 68 units a day, with BS in the range of 25 mmol/l. As soon as she would try to bring it below 19 mmol/l the girl would get typical hypo symptoms, and BS would soar to 30-s. When I was reading that at first it made me shudder. It took few months to realise that she doesn't really need insulin when she is awake. I guess that's their main worry that they will loose this good 10 hours of good readings going back to increasing doses as it didn't work before.

 

I'll write about the glyco refill techinique in more detail tomorrow. sleeps time :)

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Lorna

This is more a guess than anything else, but is their any way that she could wear a punp over night but disconnect it during the day?

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Ella1

Lorna, yes it probably would make sense in the ideal world. Unfortunately, it would be financially impossible for the family. I know they do it in Moscow for USD5,000, and it's relatively new market, maybe in a few years time...

 

I think she needs to take c-peptide test to be sure what type she actually is.

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DeusXM

Don't they have nationalised healthcare in Kazakhstan then? Or did it all go following the collapse of the Union?

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Lorna

How long do older insulins like insulatard last? If there was one that lasted about 10-12 hours, that might work for over night. Is their no sort of health fund that would sponsor a pump cos it is such an unusula case

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Ella1

It's free to the certain point. But the economy is poor, so it can't really afford to give out pump for free.

 

The old Soviet days are gone, the block is gearing up toward capitalism!

 

Lorna, I heard another story of a boy in the orphanage.. where the stuff is stealing money that are meant for his care... Very sad case. Obviously it's two different stories, but this one just proves that the funds aren't really effecient over there, the money would not reach those who need it :( I even called the UN organisation in Moscow, they said that unfortunately they can't interfere in the domestic affairs

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Lorna

Just occurred to me, if she is running that hight overnight, she must have to get up for the toilet and water? Would it help (nb not solve) the problem if she injected some fast acting insulin every time she was up?- Sorry but really can't get over how horrendous this is!

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Ella1

Lorna, I was the same when I read about it first. Her mother is on the verge of a breakdown. I must say that parents of the children with dx have to cope with so many things. The emotional burdain!

 

I couldn't tell her about this suggestion to her. She was very emotional about her phone conversation with the doc in Moscow, when they also suggested this, and offered that her daughter would come over to the hospital, and be under constant surveillance, like a prisoner. :( She didn't like that as she trusts her daughter 100%. And she would notice if she were injecting insulin, as there will be less left.

 

Lorna, thank you for your concern. I will keep you updated on any progress.

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SunniD

Just wanted to make a couple of comments.

 

My bgs were like that when I was switched to human synthetic insulins from pork insulins and I was using Humulin R and N. Humulin insulins didn't work for me and my bgs did the same thing when I layed down -automatically went to 20 mmol/L.

My windpipe collapsed also when I layed down. No endo never got those bgs in control no matter what was done. It was the insulin.

 

Eli Lily was phoned as they have a diabetic specialist there to confer with and she told me to wait another year at that time till they made an insulin that would work for me-Humalog.

 

I would say that she is having an adverse rxn to the insulin and it might be best to seek an endo and look into changing the insulin. I am a thyroid/diabetic and I was told that Humalog and now Novorapid are better insulins for me to be using. I hate Humalog also as I got the "couch potatoe syndrome" on it so I am now trying Novorapid and it's much better.

 

Also wanted to mention our secretary is a type 2 and experiences

higher bgs at nite and nice daytime bgs around 5 mmol/L. It may just be a stage she's in and this will change as the disease progresses.

 

SunniD

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Ella1

SunniD,

 

Thank you very much. I really appreciate your advice. It's definitely something to think about. I'll have a chat to her mother, though she got a bit upset recently and stormed out from the forum. I'll try to get hold of her

 

The docs also say that it will change as the disease progresses. Plus she is in such a turbulent age.

 

SunniD, what is the "couch potatoe syndrome"? I've never heard of such expression in connection with diabetes.

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SunniD

Ella, life gets really interesting when you switch insulins and go from being a productive active person to one who has trouble in her daily functions and is sitting on the couch all the time with no energy to do too much. The IDDT is now using the term "couch potatoe syndrome" and it sort of applies as you lose the ability or the energy to function much. It's an adverse rxn to insulin and I guess can occur on any insulin but I noticed it a lot more on those human synthetic insulins compared to pork insulins.

 

I am using Novorapid because I want to pump insulin and I am doing ok on it. I can live with being on a half pill of a diuretic.

I don't have a lot of choices if I want to pump.

 

When I was on Humulin R and N it was a nitemare. Every time I sat down or layed down my bgs went to at least 20 and sometimes 30 mmol/L. If I bolused it made no difference when I got up, my bgs was still around 20 mmol/L. My windpipe used to zip shut from top to bottom and cause breathing problems so I'd have to get up or roll over on side. Still to this day I sleep on my side.

 

You keep compensating for highs with more insulin and of course insulin, being a fat storage hormone, you will gain wt.

When I started human synthetic insulins I automatically gained 20 lbs of fluid in my tissues more than the previous day when I was on Pork insulins. My docs now have this documented and I reported it to the drug companies as well. If I switched back to pork, I peed a lot the first day, getting rid of all the extra fluid in the tissues.

 

This is the first time that I have found someone else who is going thru that also so it's interesting but I can surely relate to it happening. You would think it was hormones for sure but I found

out from Eli Lily that certain insulins now have more constituents in them than what was used when they first started so this helps

to prevent things like what I had happen to others. No one ever said what the new constituents were but I have now read that Novorapid is far superior so I switched and am using that one.

 

When Humulin or Humalog left my veins in a switch back to pork, it felt like gravel leaving my veins compared to the pork. When I switched to Novorapid from using Pork it was smooth sailing in my veins during the whole switch so I knew it was better for me

or at least it was usable for me.

 

Hope they have a different insulin for her to use so she can try another one. I find this really interesting also.

 

SunniD

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KLD

Hi Ella,

 

Why don't you try posting this question on the Dr. Bernstein forum? The reason I suggest that is there is an active member on that site whose experiences might shed some light on this situation. I don't know enough about it to try to describe her situation, and I'd only confuse the issue by trying to do so, but there certainly are some similarities. I know that, after being diagnosed originally with type 1 and being put on insulin, her doctors changed their minds later and said she must be type 1.5 because she didn't need the insulin. (I didn't know such a thing existed, but I understand is another name for slow-onset type 1 where the pancreas still produces some insulin.) She managed to maintain normal blood sugars for several years without insulin after that and has just recently gone back on a very small dose.

 

Karen

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SunniD

Ella, one more thing. I was on thyroid and when I got switched to the new human synthetic insulins, the docs absolutely refused to change the thyroid dose. Even when my windpipe was collapsing from insufficient thyroid they still refused. When I finally walked out of the 5th or 6 th doc, I phd Eli lily and they said the docs were all sent letters and told to increase the thyroid dose when the human synthetic insulins were started if the patient needed more. Now either the docs didn't get those letters, or Eli Lily never sent them but were quite aware of the problem there as I was speaking to their diabetic specialist.

 

I went to 42 doctor apts. that year and missed 82 sick days at work that year. I had to wait 1-1/4 yrs. to see an endo and then he wanted me to wait 6 mos. for treatment. I would have been dead if I hadn't started phoning Eli Lily and finding some things out for myself. The last doc referred me to the first doc. Go figure.

 

You might have that lady phone Eli Lily also and ask for the diabetic specialist. She may be able to be of some help. It might

also help to get her thyroid tested.

 

SunniD

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jen18

SunniD, Hi I also have a thyroid problem and I often feel like a couch potato ! but I have been using humalog for a year (since I was diagnosed) could this be the problem still?

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jen18

I would suggest getting in touch with the Barbara Davis Center for childhood diabetes, they have a web-site, I have heard of them bringing people from around the world to their clinic, from what I have heard they are the leading diabetes clinic in the U.S. maybe even the world.

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