My husband had a routine lab this Monday to check is thyroid (he has Hashimoto’s) and his fasting came back at 277. I’ve been checking ever since and he’s spending the day between 300-400.
We saw his GP Friday morning to discuss the results and I pushed real hard to not go with the “diet + exercise + time” treatment. So the doc agreed to start him on 10u of Tresiba once a day. He refused to consider fast acting to help with meals or correcting how high he is all day.
I also made him run 4 antibody tests (they didn’t know what the ZnT8 was). With Hashimoto’s, a T1 grandpa and going from a 4.5 A1C last year to camping in the high 300’s all day (without eating) seems fishy to me. Though of course since my husband is overweight, they assume T2. I am sure I offended him for demanding tests anyway.
Since he was so high yesterday, I checked his ketones and they were “large” (>80) and when that didn’t get better by this afternoon, we called the on-call physician and were sent to the ER. The ER nurses laughed when they heard what the doctor started him out on, “as if that will make a dent in such high sugars”. They gave him a bag of IV fluids, 10u of Humulin and when his blood ketones came back okay, discharged us.
We’ve been told to just keep following our GPs orders and expect continued high blood sugar for the next few weeks(?) until he eventually hits the right dose of Tresiba.
This is all so incredibly frustrating because I’ve been through this stupid diagnosis battle myself. It hurts to sit on my hands, watch him eat when his pre-meal BG is 380 and do nothing while I take my own insulin. I’ve been counting his carbs for him, and helping him learn potions for meals and snacks but when he’s already so high, and you know the meal’s going to make him higher, it makes me want to kick someone in the kibbles.
I can certainly understand why you are feeling incredibly frustrated. This seems very slapdash to me. So he’s taking 10U of Tresiba. What kind of insulin was in the “bag of insulin” Perhaps you should call the doc again. (why do these things always happen on the weekends?)
keep checking his bg and possibly ketones. Make sure he’s drinking lots of water. I’ll be thinking of you and hope you can get some answers soon.
Well, good to see you are being a great advocate! Your husband has to participate in his health…is there anyway at all you can persuade him to do better? It baffles me that GP’s don’t consult more with endos…(and nurses…lol) would save so many people from adverse experiences. With that said, remember to keep yourself in good mental and physical shape… You do have every right to be frustrated and irritible.
Oops, I can’t type. They did a bag of IV fluids, and 10U of Humalin R. I’ll be testing him over the next few hours to see if that makes a dent or not. Also making him drink like a fish.
We are talking with the doctor on Monday to go over his blood sugar values over the weekend. I am not confident at all that this GP knows what he’s doing, but he’s the doc we have at the moment. I’m hoping with lab results we can move forward figuring out if an endo is the right move.
I am taking the lead now because I know what to do (for the most part) and am teaching him. He’s picking things up fast and has already done his first insulin shot. I was quite proud. Just with so many things to learn, and feeling quite awful, I’m helping keep track of things until he’s got it figured out.
Luckily he’s a very smart, motivated man, and I am confident that he’ll take good care of himself once he has all the right tools and info.
Thank God he has you as his partner!!! I’m so glad you’re going back Monday. Maybe you can get a referral to a CDE. I guess the goal for the weekend is to stay out of the ER. My heart goes out to you both, I know you two will get this figured out!!
Happy to report that the ER trip has him feeling better. He was so dehydrated it took 6 tries and 3 nurses to get the IV in, his veins kept “bursting” and “collapsing” due to dehydration the nurses said. His blood sugar has come down to an all time low of 236 which is a relief to see it going in the right direction for once.
I found something called “electrolyte water” at the store. It’s water with magnesium, potassium, sodium, added in, but is still 0 carbs and doesn’t seem to be evil. I bought some and it tastes like regular water so maybe this will be helpful.
Plenty of good advice here and I won’t waste space repeating it. Just one additional thing:
I don’t know where you live, but if it’s in the US, most places will allow you to buy Humulin or its generic equivalents without a prescription. It may be worth your while to check into your local laws and find out. A number of us here (including yours truly) started on insulin on our own, before it was prescribed, by reading, studying, and learning everything we could. And we mostly didn’t have knowledgeable spouses to provide additional guidance.
This has to be an individual choice, obviously, and no one can or should urge it. I can understand the desire not to ruffle the doctor’s feathers any more than you can help, but speaking only for myself, I would not submit to living with BGs in the three hundreds just to avoid offending someone. I’m the one with skin in the game, after all.
Oh noes!!! I’m so sorry your husband is going through this now too! Thank goodness he has you to help and support him! That doesn’t sound like a very good GP that you have, but you did awesome by insisting that he get insulin. Could you ask him to refer you to someone else for a second opinion?
Just to add to what @David_dns said, if you live near the Canadian boarder, all types of insulin and diabetic supplies (with the exception of pumps and CGMs) are over the counter here (not that I’m advocating for self medication). You could simply drive up, go to a pharmacy (I’d suggest WalMart or Shopper’s Drug Mart/Pharmaprix, as they tend to ask the fewest questions when I’ve bought other drugs that don’t require a prescription but are kept behind the counter) and ask for whatever you’d like (Apidra, Humalog, Novolog, Levemir, Lantus, etc). It will probably be a lot cheaper here too (I pay $78 CAD with tax for Lantus SoloStar pens at walmart). While you’re there, you can also get some codeine (called Tylenol 1s) and an epipen over the counter. Because we’re weird here - you can have codeine, but no Mounds (the only good Hershey’s chocolate).
Yeah, the humulin brought him down all the way to 160 yesterday which made him feel so much better. I will “go rogue” if we show his #'s to the doc tomorrow and he continues to refuse him fast-acting insulin. Really hoping that once we have the blood tests we can get into an endo (perhaps mine).
I didn’t mention this but I got into an argument with the doc about how basal insulin works (preventing it from climbing overnight and between meals, or when he skips a meal, vs. using a bolus insulin to correct a high or cover a meal). Doc said “maybe that’s how it works for you but that’s not how it works” and insisted that a basal only would cover meals too… So I really think this doc won’t work out.
I have lots of leftover Novolog pens from my switch to a pump…
But yeah trying to get a doctor to work with him, instead of going things alone. Everything is easier when you have a doctor to help advise and provide prescriptions!
I don’t know how old your doc is but an old intermediate acting insulin called NPH was used for many years. NPH covered both basal and some bolus needs – that is an old-fashioned regimen that many found too demanding for its meal timing.
I agree that this doctor will not likely meet your husband’s needs going forward. Be aware, however, that people like yourself who pay attention to symptoms, insulin doses, and blood glucose levels, will likely outrun most endos’ knowledge when it comes to personal diabetes routines.
I think your husband will feel much better once he is on a basal and bolus regimen with an insulin dedicated to each function.
I think a large challenge of any new serious medical diagnosis is finding medical practitioners that fit well with your unique needs. Good luck!
Since I went into “momma bear mode” on Wednesday, all the stress has ironically lowered my insulin needs, (TDD went from 115 down to 80), so I’ve been dipping low constantly and have been suspending my pump pretty often.
Hubby just joked that he didn’t “get diabetes” and instead he “took mine”, so now I’m cured.
Continuing the above line of reasoning . . . best case is that the doc is thinking in NPH terms and isn’t up to date with how modern insulins work. And that’s more than bad enough. Worst case is he just doesn’t understand insulin, period. Either way, some serious strategic planning might be in order.
He sent the doctor his #'s yesterday morning and the doc increased his Tresiba from 10 to 20u. We pushed for fast-acting insulin and the doc said if it’s still bad by Wednesday then he would considering prescribing it.
argh I am watching his BG like a hawk and giving him fast acting when it goes over 400, which I’ve done twice now. Um… we aren’t telling the doc that, after the doc flipped his *** when husband said he felt so much better after insulin because he assumed that I had given it to him. Husband explained that he got the insulin at the HOSPITAL which the doctor should have known… I’ll skip over the angry phone calls but yeah this doc is awful and we are just playing along as best we can until we can get insulin and get a new doc.
We are trying to get him an appointment with an endo. It’s hard because we don’t have his test results back (A1C or antibodies) but I’m hoping that comes back soon. I 100% agree we need a new doctor, it’s just really hard to actually do that in a reasonable amount of time, and then start over the entire “yes, he’s overweight, no diet and exercise is not working” debate.
His c-peptide results were reported yesterday: 3.5 (range 1-5) with a fasting BG of 275. Doc declared him officially a T2 (err, that’s not how it works doc…)
Side note: Having gone through this myself already and now navigating it with my husband, this is much more frustrating. We know what’s wrong and can’t convince anyone to help us, even when we know exactly what tests to run and what medication to ask for. I’ve seen this happen to countless new members here and … I just can’t even. I makes me break down to think about it.
I had similar results when first diagnosed. My c-pep was 1.2 (reference range 07.-2.1) - but the reference range was fasting and I had eaten 90min before the test. Antibodies were negative, but only anti-GAD-65 was tested. IN that case, I’d already been referred to an endo and the endo declared me ‘officially’ Type 2 at that point - however, with orals failing to do anything good without also doing a LOT of bad things to me, I had to be on insulin only.
At the time, I was NOT overweight, but taking insulin and getting poor diet advice (which I only partially followed - but that part was too much…), I gained weight - so now, it’s even harder to convince anyone of any other possibility.
Joke is, I have had several subsequent c-peptide tests no additional antibody testing), which have returned progressively lower results. Last September, my new (soon to be retired) endo declared me Type 1. Doesn’t change what I’m doing (and to be honest, I’m not even sure of the accuracy of that declaration), though. Ironically, it made me feel like I was being diagnosed all over again - complete set of wild emotions there…
End of the day, yes, he needs a new doctor. Yes, he probably needs basal/bolus insulin. Get what he needs to be healthy, don’t worry too much about the rest.
Any doctor who said (in effect), “stay in the 300s and 400s for a while and then we’ll consider maybe doing something about it” is one I would give the heave-ho. I’ve never had to do battle with a doctor the way you are being forced to do, and I can only try to imagine how intense the frustration must be, especially since you know so well what the issues are and what needs to be done. You’re doing all the right things and were I in your situation my strategy would be precisely the same.
Given what’s at stake, you have to do what you have to do. Don’t settle for anything less than what he needs (I know you won’t). You have friends here who are behind you 100%.