[ohhhdear]

Hello all,

I hope it is ok that I am posting.

I am very concerned about my grown daughter.
In a nutshell, her type 1 is out of control. She told me again today that the doctor would not give her any more insulin--that she has enough . The doctor said she seemed to be resistant to insulin.

Her a1c's usually run in the high 9's.

She takes alot of insulin and each month she is usually short a bottle--so we go to the store and buy a bottle over the counter and I am the one who buys it. And I don't have that kind of money, but I find a way.

My feeling is she is NOT doing anything to control this-- no dieting, no exercise. So, my question is-- should I just tell her that I am not going to buy her any more insulin? With the hopes she will start dieting, exercising? I know if I don't--her sugars will go out of the roof.
I'm sorry if this sounds stupid--but I honestly don't know what to do. I am NOT diabetic--my daughter is.
Thank you for any help or guidance.

 

[moon]

This must be so heartbreaking for you, and I'm truly sorry for the reason you have to be here.

With numbers in the high 9's her blood sugar is already out of control. I wouldn't stop buying her insulin, but I would find another doc, an endocrinologist, and suggest if you are going to help her with her insulin that you be at the appointment with her to learn what she needs so to help her.

It sounds as though the doc isn't knowledgeable enough to be able to help her - and that she needs guidance in which insulin to take when, how to bolus, etc. There are people here on insulin who are brilliant with it and hopefully they'll be along shortly.

Saying she's 'resistant to insulin' and the doc washing his/her hands is shameful (if that's what happened.) Was your daughter prescribed metformin, for example, to help with this resistance?

Would your daughter be open to joining an online forum where she could talk to other T1s her age? I do get that motivating her to take care of herself is the challenge ...

My heart goes out to you, and her.

 

[ohhhdear]

Oh Moon,

Thank you so much for the warm greeting. Thank you!


She is seeing another doctor now and he's doing the same thing. Not prescribing enough insulin. We can't afford to see a specialist--so we have to do what we can afford.

No, haven't heard of metformin-- I will ask her about that.
She is not the type to join a forum-- she doesn't like to discuss her diabetes at all. It's like she is in denial. I don't know.

Thanks again for the warm greeting. It IS much appreciated-more than you will ever know. Let's just say I visted another forum and they weren't too nice. Needless to say, I won't go back there. I am glad I found this forum.

 

[moon]

She is seeing another doctor now and he's doing the same thing. Not prescribing enough insulin. We can't afford to see a specialist--so we have to do what we can afford.

The problem, however, could be that you can't afford =not= to see a specialist. If your daughter won't engage enough to seek out information to help herself, and her doc isn't knowledgeable enough, then you can buy all the insulin in the world and unless she's using it properly she's going to remain sick, and get sicker.

If her blood sugar doesn't get in control, the cost of complications will make a specialist visit look like pennies. Diabetes is complicit in my advancing loss of sight, and if that's all that happens to me I'll be getting off easy. Retinologists are expensive. Surgery is expensive. I have a friend right now going to dialysis 3x/week - hooked up for hours every day. The list of complications, including heart disease, loss of feet, is long. Someone once said to imagine little shards of glass in your bloodstream - that high blood sugar is that destructive.

I'm not trying to scare you more, honestly, only inviting you to look at where you might need to prioritize the few resources you have. There are ways to get lab tests done very cheaply, at a fraction of the cost, so you wouldn't have to pay retail via a specialist.

Without knowing your financial situation (except that it's not good) or where you are geographically, it's hard to make suggestions beyond calling major clinics/hospitals (also in any major metro areas in driving distance) and inquiring about specialists for those who are uninsured/low-no income, etc.

It's infuriating that medical care is so expensive - if I ever go postal it will be on this issue!

In the end though, once your daughter has good information, it's going to be up to her to use it. Nobody else can manage her diabetes for her.

 

[Shalynne]

Limiting a patient's insulin? That's ... that's ... never mind. I won't go there. Let's just say that I also stand ready to join the volunteer postal service on your behalf.

I'm very glad you found us, and equally sorry that you had to!

I'm a Type 2, but on insulin. Diabetes is overwhelming at first, and demands more independent management by the patient than any other disease I know of. Unfortunately, our docs don't always recognize this, nor do they always provide the necessary tools.

If you don't mind my asking (and if you know), could you tell us what kind(s) of insulin(s) your daughter is taking? Most of us need more than one type of insulin to get any kind of control. Getting timing and dosages right often takes much tweaking ... eventually, most of us learn to do some/most of that on our own, with our doc's/diabetes educator's blessing.

Some folks here know how to get insulin fairly cheaply, though the selection may be limited. I'm no fan of Wal-Mart, but I believe I've seen that chain mentioned as a source.

Has she gotten any sort of diet advice, and what kind? Believe it or not, many of us were urged to eat plenty of carbohydrates ... which we simply cannot handle without gallons of insulin.

Has she ever been referred to a diabetes educator? Mine were nurses, wise in the ways of insulin. (Everything I know about diet, on the other hand, I learned right here.)

If your daughter's not talking, it's impossible to know whether she is, in fact, not trying ... or if she's tried to be compliant and it simply hasn't worked.

Professional medical care is vital. But, especially with diabetes, getting together with others in the trenches can be every bit as important.

Please join us often, and keep us posted!

 

[jwags]

It is very hard to deal with our adult children. On one hand we want to protect them but on the other hand we expect them to be independent and make good choices in life. It is very hard to manage someone eles's diabetes. She needs a good medical team that she can discuss diet, exercise and insulin usage with. There are several schools of thought on insulin usage. One is eat whatever you want and just keep adding insulin. The other is design your meals and snacks so they are lower carb so you don't see the huge bg spikes and you can use less insulin. There are also different types of insulins that may work differently. Many people are put on mixed insulins which are a combo of long acting and fast acting and they take it on a sliding scale. Many people who use this type of insulin have difficulty with control. Another way to do it is to take 2 separate insulins, one long acting and then fast acting at meals depending what you eat. There are also different strengths of insulin. A good doctor should know about all the insulins and how they work. Sometimes you have to try several kinds before you find what works. A few books that are good for diabetics are

Dr Richard Bernstein Dr. Bernstein's Diabetes Solution. A Complete Guide to Achieving Normal Blood Sugars. Official Web Site


John Walsh - Using Insulin
Gary Scheiner Think like a Pancreas

You can find them all on Amazon

 

[aimster1mo]

There are many patient assistant programs out there these days, not at all like it used to be. She could most likely get her insulins free or at low cost (depending on her financial situation). Some programs that work through your Dr. or clinic and others you deal with directly through the company.
It's worth looking into as well as trying to find a free or low cost clinic, many of the clinics use these patient assistance programs for meds for their patients.

 

[ohhhdear]

Thank you very much for all the replies.

We are in St Petersburg, Florida.

It is embarassing-- but we have no insurance and she does receive the insulin at no charge. She pays for doctor visits and lab work-which gets expensive. She has cancelled several doctor appointments because she doesn't have the money.

She is looking for full-time work , but it's very difficult to find a job in this area.

I've been looking for a program, but cannot find one. The county won't take her because she works part time and attends school. And because she took out student loans, that puts her over the limit. She did go there before she started back to school-- but I wouldn't recommend it to anyone. (For example, I went with her to one appointment and tried to tell them she needed more insulin--that her sugars had skyrocketed to 598.) They acted like it was no big deal. The health department apparently thinks that diabates is a "one size fits all".

I am so very concerned. If anyone knows of any places in this area, please let me know. Thank you to everyone.

 

[Richard157]

If your daughter begins to take her diabetes more seriously, and gets good control, then she can have a long, healthy life. I was diagnosed in 1945, when I was 6, and am very healthy.

I don't know your daughter's age, but if she is very young or a teen, you may want to join the group:

http://www,childrenwithdiabetes.com

Good luck to both of you!

Richard

 

[Shalynne]

No call for embarrassment! Health "care" is atrocious in this country.

If you haven't done so already, you may want to check out the following:

-- FreeDiabetesTestSupplies.com. There's a list of drug stores that provide free med and testing refills, with prescription. Often, docs and social service agencies aren't in the loop with each other, let alone have any knowledge of alternate sources, so they can't send you there.

-- Test strips are, perhaps, the largest expense -- and they're our first defense! If the drug stores above won't carry them, or strictly limit their supply, you may want to consider eBay. Seriously, several of our members do that. Meters themselves are often dirt-cheap or free. Try a Google search for "free diabetes meter."

-- There are self-management, support group and other options available through the University of South Florida Diabetes Center. I wish I could vouch for their quality.

Aaand, a point I forgot earlier ... Exercise. I was told not to exercise if my level is over 250. If your daughter is spiking near 600, she is likely unable to exercise much, or at all, even if she honestly believes she feels OK. (Yeah, speaking from experience, here. And I only hit the low 500s!)

When she gets her levels down, there is no need to head straight for the Olympics. Walking a bit more than usual will suffice, especially at first.

Hope some of this is of help. Please let us know!

 

[moon]

For lab tests, I can recommend Online Medical Lab Tests | Blood Tests I gave this link to a friend who uses them and is finally able to get some lab work done that she couldn't afford before. One orders the tests online, then goes to a lab closeby (there are several in St Petersburg), and it's much cheaper than having it done at the doc's. I was just with a friend today at her doc, and we found out what lab work he wanted, and she'll go this route because she's not insured either.

They have prices of all tests on the site so you can compare to what she has been paying.

 

[ohhhdear]

Wow Moon! Are you serious? I just checked that link and if that is true--- she will be paying about $22 for an A1c and it's been costing over $150.

Will definitely check this out! Thank you!

 

[moon]

Great. See - we'll put our heads together and get this worked out

 

[ohhhdear]

Great. See - we'll put our heads together and get this worked out

This is amazing. I also looked up the location where she can go. It looks like it is the very same place where she has been going. I can't wait to tell her! Thank you so much!!! Already, I feel with your help, we have accomplished so much!

Thank you, thank you, thank you!!

P.S. I did ask her if a doctor ever suggested the drug, Metformin. She said no and she said she thought that was just for Type 2, but I told her it appears that some people with Type 1 can take this drug , when they seem to resistant to insulin. She stated she will certainly asked the doctor about this. Does Metformin add weight gain, like insulin does? Do you know?

 

[moon]

No, quite the contrary. Metformin has an anorectic effect.

The biggest issue w/ metformin is to start out slowly with the extended release version. It can be rugged on the intestinal system. It has taken me 5 months to be able to tolerate it - going from the regular to the extended release formulation. They started me right away on 2,000 mg because my blood sugar was so high, but had it been possible, it would've been better to start me on less and graduate up.

If your daughter has insulin resistance, she really does need to restrict her carbs, not just bolus for them ...

 

[Richard157]

I am type 1 with insulin resistance. I use Metformin and it has helped me lose weight. I have lost 16 pounds during the 5 months I have used Metformin. reducing my carb intake to 130 grams per day helped with the weight loss. I am only 2 pounds overweight now.

 

[Kym]

I can understand your frustration. I have a child he's 15 with type 1 and recently became insulin resitant (and he's very active, healthy weight and eats a good diet). It's a misconception of many that only diabetics overweight experience problems. I'm blessed with a good Dr. who is always willing to listen and help in anyway he can. We also were seeing 400 and close to 600's they added Metformin, but we're still having to do futher testing and going to a specialist to look into it futher, because we're not quiet straightened out all the way yet.

As for the buying the Insulin I wouldn't stop buying it, though I know it is very costly we had a period of about 6 months last year where we had no insurance and did not qualify for any help. Wal-Mart would sale us Humilin for $24.00 a vial, which is a lot less. Ask the Dr. about adding Metformin to go with her insulin.

I hope I may have helped a little.