My wife recently diagnosed with type 1.5 and blood sugar has never really reduced

Hello there,

I am reaching out to the diabetic community. I don’t have diabetes but my wife was diagnosed with type 1.5 a month ago. It’s been a tough journey because she was already suffering from severe anxiety so having this in her life has not made things easy. The reason I am reaching out and not her is because she doesn’t like to reach out like this so I am doing my best to do everything I can to help in any way I can.

She was prescribed insulin to counteract her high blood sugar levels. We had an appointment a month ago to discuss her high blood sugar and it turned out on the day we went, her blood sugar was sitting around 400 and her ketones were so high that it exceeded measurable numbers. They didn’t hospitalize her and managed to bring her ketones down eventually to a less terrifying number (80 count in urine) - she hasn’t had a ketone spike like that since, however, there still continues to always be trace amounts of it in her urine. Also, even after a month of insulin injections (adding 2 units to the long lasting insulin for every day that it remains over 300), eating correctly, and following the proper steps to gain control of her blood sugar, it still stays over 300. Her diet before was already pretty close to what it should be now. Only minor adjustments had to be made like adding more protein and eating a little less carbs.

I guess what I am asking is: Has anyone ever experienced anything like this? I would say even after all of this, her average blood sugar levels are hovering around 360 - she has reached 270 only a couple of times in the morning after waking and usually by the end of the day its sitting more around 400 sometimes higher even after walking after a fast acting injection (which she does at least 4 times a day - 6 units). I know that stress/anxiety plays a major roll in blood sugar but she is starting to accept what is happening and has been on board with making all of this work but it’s tough when no matter what she does, her blood sugar remains unhealthily high.

Any advice/story about what could be a possibility will be a great help and much appreciated!

Thank you!

I would speculate that she needs more insulin. Perhaps she should work with a CDE to establish proper insulin levels.

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She needs to continue to work with her medical team to dial in a proper insulin regimen. Is she also taking a long-acting insulin in addition to the fast-acting insulin? Is she carb counting for her meals and dosing her short-acting insulin based on her current BG as well as the carbs to be eaten?

There is a lot to learn with diabetes and it does get easier. I suggest that both of you read Think Like a Pancreas by Gary Scheiner to help you understand what is going on.

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What kind of doctor is she seeing.

She is, as you describe, a type1 ( type1.5 is really just type 1 with a slower onset) but the insulin approach that you describe seems more like what many general practitioners would prescribe for someone with type2.

I agree with @Brian_BSC she needs to see an educator so she can learn how to count carbohydrates and adjust her fast acting insulin dose.

There is so much more to learn. A good endocrinologist along with a diabetes educator should be able to teach her.

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Is she working with an endocrinologist, or just a GP?

I have found that some GPs overstep their expertise and try to treat diabetes themselves. This approach is really ineffective, and potentially unethical.

It sounds like she needs a lot more insulin. She must feel awful !!

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First things first.

Alex, thank you. Thank you for being her partner, her rock, and her advocate when she has trouble advocating for herself. I once heard a speaker refer to the loved ones of diabetics as Type 3 diabetics. I can see you are taking the bull by the horns and will be a wonderful team member in this new journey called life as a diabetic. Some patients don’t have that. My hat is off to you!!

It’s going to be okay. You and your wife are early in this journey. You will figure it out. While it won’t always be simple, it does and will get easier.

I concur with the above advice to get connected to a diabetes specialist and CDE (certified diabetes educator) if you are not already working with them. Some primary care docs either don’t recognize, or just choose not to obey, their limitations. It really does take a specialist to get the best results, because there are so many things you wouldn’t think of that ply a role here.

For example, one thing to keep in mind is that ALL hormones can have an impact here. If your wife still does “women’s things” every month, those hormones will create lows or highs. Is it possible she has anything going on with her thyroid? That will be involved too.

Continue perusing the site and be sure to ask anything you need to. You will find many here who have been where you’re at, and we all want to help.

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You’ve already received some good advice here. With diabetes, knowledge is power. It may seem like a large task now but you will get a better feel for your wife’s new insulin/food/exercise routine. Don’t get discouraged. This is a solvable puzzle but it takes knowledge, persistence, and a good attitude to do well with diabetes.

I’m also T1D LADA. You and your wife can do this!

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auntlisa1103 … WELL PUT !!

Alex … one other thing … get her an insulin pump.

I’ve been T1 for 31 years and I have been using an insulin pump for the past 12 years. The difference between MDI and an insulin pump is like the difference between a Lamborghini and a Fred Flinstone car.

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I would respectfully disagree with Michael on this one. I think starting out on manual injections is the best way to learn how to properly manage your diabetes. Without that knowledge/experience and going quickly onto the pump can potentially put you in a worse situation.

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In my experience they won’t entertain a pump until the patient has some semblance of control anyway.

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If her blood sugars continue to be that high, she is definitely not getting enough insulin. IMHO any doctor who allows their patient to be run at such high numbers without intervening in management should be liable for malpractice. She must be feeling terrible with sugars so dangerously high and this will surely be adding to her anxiety.

A change of doctor, and a CDE are probably on the cards.

She may also have insulin resistance, and you should ask her Doctor about adding an insulin sensitizer such as metformin.

When a person’s blood sugars are so high, it can take a lot of insulin to bring it down. The amount of insulin may reduce when sugars are more under control.

What diet is she following? High carb/ low fat? An alternative is very low carb, moderate protein and higher fat. This type of diet may actually be beneficial in reducing anxiety. It would make blood sugar control a little easier.

I will also direct you to utube site “Bernstein Diabetes University”. There are more than 200 recorded sessions on various aspects of diabetes management. Getting her blood sugar levels to safer levels (consider people without diabetes typically range from about 70 - 140) so she is 3 - 4 x higher than normal, will be first priority.

Please pursue this aggressively. With such high sugars she is at risk of many complications, and also acute problems such as stroke, heart attack, DKA (diabetic ketoacidosis).

Lastly, thank you for being your wife’s advocate. Please ask all and any questions. This is a very supportive community here.

I agree. You have to have a certain competence in MDI (multiple daily injections) before you get a pump, because if something goes wrong with your pump-- you have to take MDI.

The experience of that will help you understand a little of the benefits of using a pump.

But first she has to get her BG down. She will be astonished at how much better she feels with less elevated numbers.

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That’s also what I have thought. We just haven’t received that sort of direction yet. Her doctor told her to increase her long lasting dose by 2 units for every day her BG remains high.

Thank you and I will look into that book. She is taking a long-acting dose in the morning and 5 units of a fast acting before every meal. It’s currently 5 units of the fast acting. Her doctor sent her a little chart for it through email what units to take. It’s 5 units for every time it is over 350, which is most of the time at this point. She has switched to more protein and less carbs as well as upping her healthy fat intake.

We definitely need to look into gaining contact with an endo, and yes, since this is just the beginning we are still seeing a general practitioner. Some of the results she had read type 2 mellitus without complications (her A1c that day was 12.1). I am doing my best to educate myself to help her while she is coping and until she is ready to face this head on.

Honestly, it is extraordinary to have someone say that in a time like this and receiving a response like this and from the others who already have today has been sincerely uplifting. Thank you so much!

We will definitely be pursuing a diabetes specialist and cde - as of now, her doctor has been very good to her but I think someone more suited to this field would definitely make me (and her) feel better about all of this. She does still cycle, but we are thinking that she may be in perimenopause. Her thyroid tests came back positive, a little high but still within normal ranges (as far as the test is concerned)

I really can’t thank you, and the others who have responded already, enough for all of your input and I am quite sure that I will have dozens, if not hundreds of questions, so, really, thank you so much again!

Thank you so much! I’ve definitely been spending most of my free time reading about everything I can regarding the subject since this has happened. I’ve already learned so much but, I also know the well of this knowledge is a deep and vast one. Thank you!

Thank you and thank you for the info! I am honestly blown away by the level of support from this community so far. It’s beyond refreshing for us right now.

I have definitely been reading about all of the risk factors of maintaining such a dangerously high glucose level which is how I ended up here, hoping someone would have an answer as to why her levels stay so high so consistently. She was already a pretty healthy eater before all of this (symptoms in the past year included), her main happy meal was fruit and vegetables with only small sugary indulgences maybe once a week. We have changed up her diet to include a little more protein (she wasn’t consuming much before), and more healthy fats by consuming more fish (tuna, salmon, etc…) as well as introducing more omega-3 supplement gel caps.

I will check out your suggestion and thank you. Have you, or anyone, ever seen levels stay that consistently high for such a long period of time? Even after 3 weeks of injections with the long lasting one being increased by 2 units every day (now 24 units)?

I definitely worry about it but I know we are on the right track because she is, albeit slowly, starting to feel better. The only time she really feels ill is when her ketones start to build up a little bit. It’s only happened twice (and not dangerously high, thank god) since we last saw the doctor 3 weeks ago. She has since seen a dietitian (briefly) since then as well as the pharmacist.

I also read about metformin and until we find a specialist, we will have to discuss that with her current doctor.

Thank you again for your kind and supportive response!

6/21/17: I’d also like to add that she is fatigued hardcore. Especially after she takes the fast acting shot. She sleeps a lot and every time she takes the fast acting shot, it just takes her down? Is this normal or is something else causing her severe fatigue?

The fatigue could be from the high blood sugar, or it could be from hypothyroid.

Thyroid being out absolutely can affect blood sugars.

Please request thyroid tests asap. Starting tests should be ft3, ft4 and tsh. Tsh is ideally 1 - 2 range. Ft3 and ft4 should be in the upper half of the reference ranges. Bottom / low normal not OK.

Other things to test are vitamin D levels, b levels (and for anaemia).

Thyroid and vitamin issues are common comorbidities with diabetes…

I’m a little surprised that she is not on a sliding scale for the fast acting. Many if not most on fast acting have ratios of insulin to carb and insulin to x number of blood sugar points high (e.g. I take 1 unit for every 50 points I need to come down). That may be a question to add to your list, which I know is probably growing by leaps and bounds :slight_smile: Admittedly a specialist is probably better suited to recommend the specifics of those ratios.