Interesting visit to Endocrinologist

[Nuts]

Following over a decade of very well controlled diabetes, by husband's glucose levels skyrocketed after ALS started slowing him down. We've been struggling to get down from the mid 300's, and finally got him averaging 200, but it's just been taking too long. Yesterday we spent two hours in the Endocrine Clinic at the Durham VA and came away with new hope.

Matt is currently taking 275 units of insulin a day (long acting and short acting). That is 4x what would be expected for a man his size. His weight initially went up, but has stabilized at 218, and we created a new challenge for the doc with our need to maintain his weight while lowering his sugar--just the opposite of what they normally strive to do. We learned that insulin is an anabolic steroid, so those large numbers may be actually contributing to his weight gain/maintenance, but that his climbing AIC level puts him at the edge of the tipping point where the diabetes will cause him to lose weight. Hmmm. Unfortunately, I'm sticking him with so many needles and so much insulin that it's bubbling back up and not all is getting into his system. We also learned that with that much insulin giving smaller amounts with meals is a waste of time. The trick is stabilizing throughout the day. I'm so glad we asked the right questions to get referred to endocrinology...

He'll be switching to a higher concentration insulin that will only require 0.2 (ml I think--it's coming in the mail) twice a day, and this doc will work with us via phone or email to adjust the dosage. YEAH!!!!!! We actually spoke with two doctors in the clinic and they feel that with the smaller injection will increase the bioavailability of the insulin (not escaping to bubbles under the skin).

I've heard from other folks that PALS often no longer need the insulin as ALS progresses, so this situation has really perplexed me.

Never a dull moment, huh? What an obnoxious loop on this rollercoaster we are riding

Oh, I have tried lower glycemic, healthy calories, but then my darling plays his trump card (I only have so many meals left to me), and I can't argue with that. Happily, the wonderful men we saw yesterday didn't either.

The moral of the story--no matter how much you like your PCP, don't be afraid to ask to see a specialist. Let's face it, our PCPs handle such a wide range of issues that they can't know everything about everything.

 

[Atsugi]

Good post, thanks.

 

[gooseberry]

Steve is getting to this point Becky. He has gained 10 lbs of the 60 he lost . But now his a1c is starting to climb. He isnt on meds for his diabetes because of als using so many calories and trying to maintain. I know things are out of whack metabolically again because he gained the weight during this last, fast progression. For him, he can tell progression when it is happening, I see it in weight changes. He is at 250 now and wanting to diet.

 

[Nuts]

What a conundrum, Steph. Just watch his A1C. We were told that 10 is generally the tipping point when they start losing weight. Geezz, which is the more evil? Matt helped his uncle during his last year of life and watched what horrors uncontrolled Diabetes can cause.

Thanks, Mike!

Becky
Queen of Everything (just please one thing at a time)

 

[chally]

Hey Becky, & Matt, wow that sounds like catch22 , hope ya git it figured out quick. We are in town now and it has made life simpler. Progression is steady downward but attitude mostly good. Got a tells w/ bedlacks on 17 the might even be down there to va again. Will let ya know , love ya folks chally

 

[maryhahnward]

Becky,

Great post, you bring up an issue we are grappling with right now. Tom was diagnosed with diabetes a little over two years ago, well after his ALS diagnosis. He became diabetic about over night. Over a period of a few weeks diabetic symptoms started small and skyrocketed in no time. His A1C was 10.6, and fasting sugar was 300. His fasting sugar had never been over 100 and in fact was done with routine blood work about 3 months prior to this 'episode' and was 95.

The first year he was on glyburide once per day, and we worked with diet, smaller meals, foods with a good glycemic index, and lots of water. The second year the doc took him off the glyburide, and we managed him with food only. Since November his fasting sugar is rarely below 120. His meds were changed to metformin twice a day, yet still his fasting number was 135 this morning. He sees an endocrine doc at Duke as well though for another condition unrelated to ALS, and diabetes, because, you know, one or two conditions/diseases, are not quite enough for us. We are on the jamming 5 lbs of stuff into a 2 lb bag kind of life journey. He didn't hold it against us when we introduced diabetes into the mix and worked with us for some ways to manage the battle of diabetes vs ALS - they are 180's of each other - lose weight v maintain weight. We are scheduled to see him in April. I should email him ahead of time and tell him to get his thinking cap on because Tom's meds were doubled in strength yet his sugars continue to rise. They should do a study on ALS and diabetes...

A week ago he twisted his knee. His left foot didn't follow quick enough when he turned and his knee is swollen, sprained, and doesn't seem to be getting much better. He had them exam it last week at clinic and all are in agreement there is nothing much to be done but ice it, wrap it, and hope it isn't a harbinger of things to come.

 

[gooseberry]

Mary -3 yrs or so before steve was dignosed with als, he had bloodwork at christmastime which was normal. In march we had to stop every 45 minutes when we were coming back from a trip. By summer he was napping all day and groggy, slurring his words. In august he had bloodwork...his glucose and a1c was thru the roof. I was told to get him to the hospital. There they took blood...700 was the reading and the highest the meter went. The year before this he had gout. The same year he was dx with diabetes he had kidney stones 2 times. It was crazy but seemed like his metabolism went crazy. Within a year he started with fascics in his rt bicep. Then it began....this crazy journey we are all on...

 

[Nuts]

Mary, the doc we saw at the VA is a Duke Doctor, and we liked him a lot.

Oh, here's another weird twist--Matt's glucose is always highest first thing in the morning. It goes up while he sleeps. Oh, and he's on Metformin also.

Steph, 700?!! Wow. So scarey. We left Matt's insulin at a hotel last fall while on the Colorado trip and after waiting 4 days for them to ship it to us, his reading went up to over 500. At that point we just paid out of pocket for more. Ouch.

This is a crazy ride, and Mary, you're right, one or two diseases are just not enough.

Chally, please do let us know if you come back this way. You know you have a place to stay!!

 

[gooseberry]

It was so weird. The doctors in the er and pcp commented this was highly unusual.

 

[maryhahnward]

Oh wow on those numbers ladies, 500 & 700...no words, it's amazing y'all survived it in one piece. Tom's numbers are higher in the morning too these last few months.

Becky - we are so fortunate to have the benefit of the Duke docs at the VA. I think Tom's endocrinologist use to do a day a week at the VA but hasn't in a while. He was instrumental in getting the VA to prescribe a medication he was on for years, and was doing well with, but not on their formulary. He is amazing.

Steph - I love that "Queen of Scheduling" so very true isn't it???

Chilly - we told Dr Bedlack we met up with you and Beth and boy did he give a big smile. Hope y'all come down to the beach again if head this way!!!

 

[gooseberry]

I said to the neuro that diagnosed Steve initially that I believe this to be a metabolic disease. She disagreed but anecdotally it seems possible. Many of our pals are diabetic, have kidney stones, etc.

 

[affected]

I'm not sure that 'many' of our PALS are diabetic or have kidney stones.
I've heard of only a handful, most of them current ones here.

Chris had never been seriously a day in his life, except for an adult dose of chicken pox.
He had never been in hospital, had never had blood drawn, no idea of his blood type.

While he was a PALS he remained as healthy in every other way as he had ever been, all blood tests always made it seem like he was as strong and healthy as an ox.

While I'm only reporting back one person, if ALS were a metabolic disorder it would be known, but as far as I understand the research to date, ALS has not shown to be metabolic, though other neurological conditions are.

I think that the combination of diabetes and ALS - with the reduction in activity, the amount of calories being consumed for what used to be small tasks and then whole change in metabolism as a PALS wastes - may have more to do with all the weird blood results? I really don't know either, as I've not heard many CALS over the past 3 years talking about all this being common. I can't imagine adding this nightmare, and here are three of you having similar issues!

 

[gooseberry]

Funny you say that Tillie. My dads doc said his tryglycerides had nothing to do with his renal cell carcinoma which was metastatic. But every time, and I do mean everytime, his tryglycerides would spike to over 400 before they knew he had a new met. Finally showed the doc to prove to him this was occurring. We charted everything so it was easy to show.

 

[lgelb]

Larry had diabetes years before ALS. He was on metformin and his weight was constant throughout. His A1c actually improved during the ALS years, which I could attribute to 1) still eating by mouth so no corn syrup-based formulas and 2) less extracurricular snacking, obviously, since he was paralyzed. But some of you seem to have the opposite experience.

Hypermetabolism in ALS is a real thing, but we don't know the whys yet. Lipids may yet be a key.