Thalassemic with Diabetes due to Iron Overload

Type 1 and LADA New to Type 1 Diabetes
#1

Hi all,

I’m Thalassemic and recently diagnosed Diabetic due to Iron overload.

I just can’t seem to find a correct Insulin Plan and my Dr. isn’t much help and told me to find the correct dosage. Here’s what going on:

I weigh 36 kg, my Dr. put me on 8 units of rapid insulin (ActRapid) 3 times a day (a shot before each meal)

I started at a level of 414mg/dl and on the second day before lunch I felt like throwing up and light headed. I checked my level and it was 114mg/dl. I called my Dr who told me to take the shot anyway. I refused and took a light lunch.

I decided to skip the shot at breakfast (which is just 2 bran bread slices with a light touch of margarine and a cup of milked tea).

Now my levels stay about 280-350 before lunch and dinner and I take a shot. This doesn’t seem to work and I’m trying find a better plan.

Any suggestions would be highly appreciated.

What is the lowest level I should be taking insulin at. (E.g I don’t feel well if it is <120 and I don’t take the shot)

#2

Anyone?

O.K just tell me at what levels do you take you insulin shot?

#3

Do you also take a long acting or basal insulin ? The usual method for insulin dosage is a ratio… Insulin:carbs for instance a 1:10 ratio would be 1 unit of insulin for every 10 grams of carbs. so you would need to learn carb counting. I see you are in Pakistan so you probably don’t have access to diabetes education. If you can get this book, Using Insulin it will give you good info on how to use insulin. I would not suggest just skipping the insulin with your meals. 114 is actually a great number, although at first since your BG has been so high it will make you feel low. BS at 70 or below is considered hypo and should be treated.

Here are the blood sugar goals I was given when first put on insulin
Fasting and pre-meal: 80-120 mg/dl
1-2 hour post-meal: 140 or <150 mg/dl
I was instructed to test before Bfast, Lunch, supper and at bedtime.

I was also put on a mixed sliding scale which means that I was given a dosage of insulin per meal and added insulin as necessary as per sliding scale according to my pre-meal readiings.

Insulin:
Breakfast: 3 units
Lunch: 4 units
Supper: 5 units

Then use sliding scale as needed
for pre-meal blood sugar
If pre meal BS is Under 70 Hold Insulin
If pre meal BS is 70-150 add 0
If pre meal BS is 150-200 add 0

If pre meal BS is: (add units to the meal dosage above)
201-250 add 1 unit
251-300 add 2 units
301-350 add 3 units
351-400 add 4 units
>400 add 5 units
This is only meant as a temporary treatment until patterns in readings can be discovered and you notice an insulin to carb ratio so it is important to log your meals with carb counts and units of insulin needed to cover the total carbs. If blood sugar is at or below 70 take about 15grams of sugar/candy/juice and recheck in 20 minutes

At the very least, I would start with a 1:15 ratio…meaning 1 unit of insulin per 15 grams of carbs. look on the internet for information on counting carbs…for instance, if the 2 bread slices you had are 15 grams of carbs each your total would be 30gr and would need 2units of insulin.

Is there anyway you can see another doctor? It sounds like you are left to your own devices…

I am sure that someone here will give you better advice since I am still new to insulin also; however, in the meantime, I hope this helps you find some balance…just don’t skip insulin with your meals…

Take care~

#4

Hi Sajid
Kristy has given you some really good baseline advice. I am sure you have a panel of doctors treating your thalassemia. Be sure to ask more than one about how to handle all of the things you have to do each day. Also there are some very good web sites about this on the internet. Just type in thalassemic on your search engine and hit go. They have a good section on glucose intolerance and insulin resistance. Read as much as you can about all of it. In the meantime Kristy’s advice is very good. Good luck and come back to let us know how you are doing or with any questions.

#5

Hi Kristy,

Thank you so much for such a comprehensive reply. I really appreciate it.

I’m using only Actrapid HM by Novo Nordisk.

I had consulted another doctor (before reading your post) who told me to control my level first before sticking to a casual plan and put me on 10 units before each meal to bring the level down no what the level is above the 120mg/dl; and this morning before breakfast I was at 240mg/dl and took the 10 unit shot as per his directions. I’m not much of a physical guy (like all computer geeks) and again by lunch I almost felt passing out. I checked my level and I was down to 68mg/dl. (So much for the doctors’ advice)

You have explained it so well and I will indeed follow your advice as there are no special diabetic support group locally; just so called experts who only go by the book.

I guess an experienced person can beat book worms any day.

Thank you again so much for going into all that trouble to explain it with details.

Regards,
Sajid

#6

Thanks Saundra,

Indeed Internet is the best channel to meet people who are in the same shoes as ourselves. I am a member of thalpal.com which is a great resource for Thalassemia; however, there is no comprehensive guide for Diabetes on it (just a handful of patients who have personalized plans given to them by their doctors).

I’m sure that this site is the best resource for Diabetes and meeting wonderful people like you guys who understand us better.

Regards,
Sajid

#7

Sajid,

Was no trouble at all. I just hope you can find some control. I know it can be very frustrating and it seems there are always constant adjustments to insulin in the beginning. You now know that the insulin you had with your breakfast was too much for that meal; try reducing by 1 or 2 units tomorrow. I would also suggest, if your fasting (pre breakfast) levels continue to be high, that you ask your doctor about a long acting or basal insulin. For example, I was also put on 10 units of Lantus at bedtime and increased by 1 unit every other day until my fasting BG was at or below 140 mg/dl …I now take 12units to maintain a fasting usually below 100.

Just keep asking questions and read as much as you can about insulin and diabetes so you can be prepared if you need to challenge your doctor’s orders…

Take Care and keep us posted!

Kristy

#8

Hi Sajid,

I also have Thalassemia and recently got diagnosed with type 1 diabetes due to iron overload. It’s been about 2 month’s now since I’ve been diagnosed and I’m doing quite well with my BG levels. When I was first diagnosed, my levels were 400-500. My doctor put me on 8 units of humalog before meals (breakfast, lunch, & dinner) and 4 units for snacks (after lunch and after dinner.) And 15 units of Lantus with my night time snacks. The snacks are optional. As far as food goes, I’m allowed 3 carb choices per meal (1 carb choice = 15 grams of carbs, therefore I’m allowed 45 grams of carbs total) For snacks, I’m allowed 1 carb choice for my afternoon snack and 2 carb choices for my evening snack. I was in the hospital for about 1.5 weeks and when I got home I had to change my insulin intake because my BG levels kept dropping. I guess being at home I became more active and when I was at the hospital all I did was lay in bed. So I went from 8 units per meal to 6 units per meal and from 4 units per snack to 3 units. As for the Lantus, I went from 15 units, to 10 units. Like I said, my BG levels has been quite well. This plan works for me. Also, I weigh about the same as you. I’m about 4 pounds heavier than you are. Anyway, I hope you’ve found something that works for you. If not, I hope this info is helpful to you.

#9

Hi Thoa,

I remember you posted on thalpal.com too.

It’s nice to meet you here as well.

This site is a great place to get all the info about Diabetes. The members are very kind and caring.

I hope to see you posting on both sites :slight_smile:

There is one thing that I want to ask you.

Can you tell me how you managed to take shots with your Desferal? My gut and thighs are all sore with Desferal and I can’t reach the plunger when I try to take my shot on my arm while pinching with the other hand :smiley:

Any suggestion will be highly appreciated.

Take care :slight_smile:

#10

Yes, thanks to you I found Thalpal.com. =) Anywho, I probably won’t be able to post as much as I’d like to since I’ll be super busy with school. But I will try to be as active as time will allow me. To answer your question, I don’t do desferals through the usual subcutaneous needle and pump on the stomach and thighs anymore. Because I wasn’t compliant with that or exjade for a while (which is how I got diabetes) my doctors now make me do desferals through my port 5 nights a week (like an i.v) now. I get my needle changed every week. And I know what you mean with having to take all the shots from the insulin and then your desferals. The first month after I got diagnosed with diabetes, I gave myself insulin the usual way and I hated it. Then I asked my doctor if I could use the iPort and that helps so much. I love the iPort! If you’ve never heard of it, look it up. It’s a port that has a needle and a cannula around the needle. You choose a site on your body and inject the iPort, and once it’s in you, you pull the needle out and the cannula stays in you. Then every time you give yourself an insulin shot, you just do it through the iPort, no pain! The iPort can stay on you for 3 days and then you change it. It really is great. I don’t do it on my arms though because I’m very thin and you’re right, it is hard. But what my nurses and doctors have suggested to me if I wanted to do it on my arms is to push the back of my arm up against the wall, that way you don’t have to pinch your arm, the wall does it for you. And then of course you’d just insert your insulin from there. I hope this helps. And if you could get your hands on the iPort, do so! It’ll really help you especially since you have to do the desferals and all.

#11

Here’s a picture of the iPort!

#12

Normally insulin should be taken 15 minutes before a meal. If you are maintaining blood sugars at 200 and 300 that’s why you aren’t feeling well. Since you were running high blood sugars when you were at 120 which is normal your body felt strange because you were use to running high. Your body has to adjust my suggestion would be to listen to what your doctor prescribes.

#13

Hi :
i m also a thalassemia patient… my diabetes dignosed in sep 2006 …
i m on Humulin regular
Humulin N.P.H
i m facing a lot of trouble to cope with diabetes … it is realy fluctuating in my case …
it happened several time that it dropped to 450 to 40 in six hours ( in night while i m sleeping)…
it is realy difficult for to predict that how fast it will go-up and how fast it will fell down …
i need an insulin guideline … and dietry guideline… here is the details of unit i have to take in a day …

Morning …
Humulin regular 18 units
Humulin N.P.H 36 units

Evening …
Humulin regular 12 units
Humulin N.P.H 20 units

#14

Hi Umair,

I’ve noticed that we Thals. have a pretty high insulin consumption. Perhaps it is due to our compromised Hepatic function.

I’ve finally adjusted to the following regime:

Morning:
Mixtard 30/70 = 16(light meal) 18-20(heavy meal)

Evening:
Mixtard 30/70 = 14(light meal) 16-18(heavy meal)

With the above regimen I’ve managed to keep BSL around 150-250

Bit high but acceptable as if I take any more then it shoots down dramatically.

#15

Hi Sajid :
I have reduced my insulin units ignoring my BSLs … bcause i found that i m taking high dose of insulin , which is also high to my need …
a two day ago i reduced took this decission …
now i m on :

Morning …
Humulin regular 15 units instead of 18
Humulin N.P.H 30 units instead of 36

Evening …
Humulin regular 10 units instead of 12
Humulin N.P.H 14 units instead of 20

well… it seem like a bad decission to cutt off that much …
but now my BSLs are …

today’s fasting was 130
last night fast was 203

i think i would like to maintain these BSLs …

thanx for the reply sajid :
Take Care
best regard
Umair

#16

Are you saying that you’re maintaining better levels on lower insulin or you were getting hypo frequently?

#17

you were getting hypo frequently? YES i were … thats why , i reduced insulin units …

when my doses were high , it was my complusion to take a medium size meal between lunch and dinner otherwise a hypo feeling and a hypoglycemia attack or if i take medium size meal between lunch and dinner that then it result’s in high BSLs … now , when i m on low dose its not complusory for me to take a medium size … i have to take 1-2 cup of tea with a couple of bisuits and my BSL is in complete controle … thats wat i wana say …

Umair