T1D as result of Immunotherapy - Side Effects

Coping & Support
1

Hi fellow T1Ds. I’ve only been a T1D for about 3 years. I’m 77 years old. I became a T1D as a result of immunotherapy. I was treated for metastatic melanoma with Keytruda for a year. I was fine when I ended my treatment. Then, 4 months later, I went for a routine colonoscopy. I took the Gatorade/Miralax prep. All went well until a couple of days later I experienced high urination and severe hick-ups. A day or so later, I was admitted into the hospital unconscious, critical condition, BG >1100 mg/dl, acute pancreatitis, renal failure, and going into a diabetic coma. I was later diagnosed as a T1D.

From reading about T1D, I know that the only thing consistent about T1D is inconsistency.

Well, I’m reaching out for someone in “my boat”. I was coping with T1D pretty well until about 6 months ago. At that time, I got my 2 Covid Pfizer shots. With the first shot I could not get my BG down below 250 for 72 hours. They I was fine. I spoke to my endocrinologist before the 2nd shot and tried to be proactive with my insulin (Novalog/Lantus). However, even with increased baseline of insulin, I couldn’t keep my BG below 200 for 6 days.

Things levelled off a bit, until I got on a “rollercoaster”. For 4.5 months I experienced drastic irregularities in my T1D control.

I’m a creature of habit. I each the same breakfast 365. Pretty close to the same lunch. I work out every morning 365 from 2-2.5 hours. This includes both strength and cardio training.

Well, for 4.5 months I experienced randomly:

  1. BG from breakfast would go from a bump of 50 mg/dl to >125 mg/dl
  2. Cardio exercise would go from a normal drop in BG of >60 mg/dl to an increase of 20 to 60 mg/dl
  3. Virtually no response to insulin sliding scale adjustments.
  4. Occasional increased joint aches and pains.
  5. Spikes up to >400 mg/dl (normal for me is about 90-160)

From what I’ve read on Facebook from other T1Ds, some have experienced this for 6-8 weeks. Not 4.5 months. My endo sort of says, that this may be because I’m not the “normal” T1D. My pancreas just crashed from Keytruda.

These side effects sort of backed off. However, I’ll be fine for a few weeks, and go erratic again for as few days. Again, have talked to endo, but she’s puzzled. Not much experience with T1Ds caused by Keytruda. I have also contacted the ADA (They have not accumulated any info at all on T1D/Vaccine.) The CDC. Have not gotten any response from their search.

So I’m reaching out to the community to see if there is anyone else in “my boat”

Thank you, bel well.

2

Hi @hhrosen and welcome to the forum. I can’t speak to your question about Keytruda but find your doctor’s comment that you’re not “the “normal” T1D. My pancreas just crashed from Keytruda,” concerning. While I get what you’re saying about the only consistent thing about diabetes being its inconsistency, your doctor should be working with you to make adjustments to your treatment plan to manage what’s happening now, and add things change in the future.
I was on injections for 20+ years before switching to a pump - for me the sliding scale probably came towards the end of my time with shots, and in my case was for my meal injections - my basal insulin stayed the same although it was adjusted periodically as needed. For purposes of understanding, when you refer to your sliding scale are you talking about what your take with meals, or is it with your basal insulin? Apologies if this is a dumb question but I want to make sure I’m understanding and reading your post correctly.
Even if we do the same thing faithfully, sometimes or bodies simply react differently and we have to change things up. Those of us who use a pump have to make some changes to our settings now and then, and with injections you may need to use more or less background insulin or change your sliding scale from time to time. It doesn’t mean you’re doing anything wrong - just that “the Pancreas wants what the Pancreas wants” (or needs) and that will change from time to time.
Diabetes is often considered “the” culprit when things happen to our bodies; and while that’s sometimes the case, sometimes those things are unrelated. Age can bring on things we’re not used to, including aches and pains. I’ve lived in a house on a terrace, with two stories plus basement and attic, for nearly 60 years. Daily stair climbing has been great for my heart but it’s done on my knees so my doctor has me seeing a physical therapist for arthritis - and I’ll be seeing a rheumatologist once those visits are done. My neighbor of 35 years, who does not have diabetes and whose will had the same layout and is also on a terrace, had hip replacement a few years ago. The body gets wear and tear, and my diabetic body has managed an additional 25 years without surgery (so far).
Having said that, your body’s response to what you eat may be an indication you need to make some changes to your doses - background, mealtime or both. If you’re not comfortable doing that on your own, and your doctor is not helping you, you should consider finding one who can. Seeing you through your body’s inevitable response changes is part of their job.
Please stay in touch and let us know how things go over time.

1 Like
3

Thank you for your response. I very much appreciated it. When I refer to sliding scale, I’m referring to adjusting my dosage of Novalog prior to meals. Basically it’s a unit adjustment based upon increases for each range increment >140 mg/dl, > 190 mg/dl, etc. During the 4.5 months of initial reaction to the Covid shot, I was doubling my adjustments. Regarding my Lantus (slow release insulin). I went from 24 units at night to 28 units. My dosage, compared to what I’ve read about others, is relatively low. Also my sensitivity to steroids is high. Flonase allergy nasal spray sends my BG through the roof. I have 2 endocrinologists. My primary is with the VA. She and the staff have been very supportive. As I stated before, it seems very little is known about T1D and the COVID vaccine other than they both involve the immune system. I have still heard nothing back from the ADA and CDC. Generally, my T1D has been under good control (except for major inflammation issues (e.g., herniated discs, inflammation of a past root canal). My A1C has continued to be 6.9-7.1.

Going back to the statement not being “the “normal” T1D. My civilian endo says I’m a T2D, because I didn’t have any of the enzymes that appear with a T1D. They say I have “pancreas burn-out”. From I’ve read that is a problem that can occur over time having T2D. (I went from an A1C of 5.5 a couple weeks before my colonoscopy, to 12 when I was in the hospital My. VA endo says my Beta cells were ruined by Keytruda which resulted in the systemic failure (C-peptide < 0.1)

Thank you again.

4

Always glad to chime in. There are other members of the forum who have a greater understanding than I of Type1, Type2 and other “variants” (for lack of a better word). Hopefully you will get more feedback soon! Take care.

5

I’m so sorry. Being on the roller coaster is terrifying and frustrating and stressful and all-around awful.

I’m not a doctor, just a parent. But what you’re describing sounds exactly what it was like when my daughter’s “honeymoon” ended. The way our endo explained it to us was that after diagnosis, starting insulin therapy is like sending in the cavalry. Your pancreas gets to rest up and recuperate a bit, and often that means you’ll start to make some of your own insulin again. Not usually as much as you need, but enough to help. And that means it’s often easier — at first — to keep your BG roughly where it belongs.

Some people actually do make as much as they need again, and actually don’t need any exogenous insulin for some time, sparking the cruel hope that they’re cured, or that it was all just a mistake and they don’t have diabetes anymore.

After awhile, though — and how long varies from person to person, so it could be days or years later — the continuing attack from your immune system overcomes your poor pancreas, and you stop producing any insulin of your own.

At some point between the initial rally that started the honeymoon period and the end when you’re entirely dependent on exogenous insulin, there’s this really unpleasant period of fits and starts, where your body mostly doesn’t help anymore, but then randomly it does. In other words, just when you think you’ve figured out your dosing, your pancreas will kick in again out of the blue, and adding that unexpected contribution to the insulin you just took crashes you out with a nasty low. And then your pancreas will randomly poop out again, rocketing you sky high. Over and over and over, in completely unpredictable cycles until you think you can’t take it anymore.

And then if you’re lucky, it levels out for awhile so you feel like you’ve got the hang of this again — at least for awhile, before something else changes.

It really IS awful, no matter how much you try to cheer yourself up with thoughts like “if I didn’t ever change, I’d be dead.” And again, I’m not a doctor, so that may not be what’s going on with you at all. But if that is what it is, then at least you can know you’re not alone, and it won’t last forever. The end of the honeymoon is miserable, but it does end.*
————

  • Mostly. I’ve read that some people can have repeated honeymoons, where their bodies start making some or all of the insulin they need again for awhile. But even for those people, those episodes are supposedly pretty few and far between. The big picture message is that if what you’re experiencing is honeymoon-related, then it will get better. It will.
6

I thank you for your meaningful response. However, my situation is not honeymoon related. Basically my pancreatic activity related to diabetes has been gone for a while. My honeymoon may have lasted a couple of months. During my first 6 months I had major bouts of hypoglycemia. That’s when I got my G6 CGM. My problem is now strictly Pfizer Covid vaccine related. My insulin need is never below my baseline. I had the normal irregularities, which I handled pretty well with my insulin “sliding scale” dosage. As I stated to Dorie, other than instances of high inflammation the sliding scale has mostly done the trick. For 4.5 months after the 2nd Covid shot I had to double my sliding scale adjustments due to an apparent insulin resistance from the shot. However, after the 4.5 months, I’ve had bouts of “insulin resistance”. Right now, thank God, I’m back to my normal “sliding scale” adjustments.

Thank you again.

7

A thought crossed my mind as I read your response to @srozelle. Not to discount your theory about the Pfizer vaccine, but underactive thyroid is associated with insulin resistance and it’s not unusual for people with one autoimmune disorder to develop others. You may have had your levels checked already (in which case, kudos) but if not it sounds worth looking into, at least for process of elimination.

8

Hi Harvey @hhrosen, I understand what you are saying about the vaccine. There have been no studies about the long term side effects because this type of vaccine is so new and untested. I have not taken the vaccine, but I do have two parents with type2 diabetes. While I am not over weight, I have a fair amount of genetic insulin resistance. I have gotten good results from vitamins. I take 10,000 mcg of Biotin and 100 mg of Thiamin HCL (B1). I have noticed my blood sugars are in control when I take them. On days when the kids have me crazy and I forget, my blood sugars are hard to control. I require a lot of insulin to bring my numbers down. I hope this helps!

9

Thank you. Not only did I become a T1D from Keytruda. I also suffer from hypothyroidism. It also created nodules on my thyroid, fortunately benigh. I have been on synthroid for 3.5 years now. My TSH is mid range and stable. It is checked 1/4ly by either my endo, oncologist, or pcp.

10

Understood, and apologies that the last suggestion was so off-base. :slightly_smiling_face: I just did a quick Google search, because I’d never heard of Keytruda before. In case others are in the same boat, here’s some info from the manufacturer:

I definitely hope you hear back from someone who has experience with Keytruda!

For better or worse, we don’t, so I can only throw out the typical T1D stuff. So for whatever this might be worth to you, we have also seen her run ridiculously high and require more insulin than we thought possible, sometimes for months on end, when experiencing:

  • hormonal changes (both the short-term monthly kind and also the incredibly frustrating long-term, life-stage kind);
  • fighting off/recovering from illness;
  • healing a broken bone;
  • on ski trips (some combination of elevation, cold weather, and excitement, along with all the restaurant carbs we’re not as good at estimating, all seem likely contributors there);
  • and generally being under stress of any kind from whatever source.

Just throwing all that in there, since it’s so common for there to be multiple things going on at once. Regardless, I’m glad things seem to have leveled out for you, and I hope it stays that way!

11

Don’t know if I mentioned it, but my VA and private endos both agree the problem is caused by the COVID vaccine. The reaction I have experienced is not uncommon, but the duration is.

12

She didn’t have any adverse reaction to the Pfizer vaccines at all. Not even tired.

I did remember a recent thread with a bunch of people posting their reactions to the vaccines. Maybe something in here will strike a chord with you?

Sorry we can’t be more help!

13

Please get the shot.

I’ve made some tough decisions in the last couple years. One was taking Keytruda. The risk of not getting it was a possible recurrence of metastatic melanoma anywhere in my body, brain, lungs, etc. I’ve suffered from it, but would I do it again? Yes, I sure would. As stated before I’m 77. With the cancer issue, thyroid issue, T1D, and age I was high risk for Covid. My wife, who is 76 and has been on oral chemo for lymphoma, is also at high risk. We both decided and got the COVID vaccine as early as we could. I’ve had cousins and friends die from COVID. My side effects are a pain in the butt, but not getting the shot could have been a lot worse.