Diabetes Insipidus - Treatment with LDN?

Posted by Scarless @scarless, Oct 12, 2023

Hi there, I was born with DI and it was well managed until my late 20's. I have needed DDAVP less and less as time goes on. While that might seem like a good thing - as one unsympathetic Endo doctor told me; I have had an increase in migraines, exercise intolerance, dizziness, nausea, that whole thing. I switched to oral and break my pill up into 6ths when I need it. Sometimes it's one every 24 hours, other times I go days without needing it. If I was free of any symptoms, this would be a gift - but I am just having the hardest time managing my disease.
Two years ago I was diagnosed with beginning stages of Hashimotos and it was thought that maybe that was causing some of the issues. But I changed my diet and got my antibodies down from 138 to 41 with most of my Hashimoto symptoms gone.
At this point, my naturopath thinks that my DI might be what is the autoimmune. There is emerging research that DI is thought to be an autoimmune more and more.
So, to my question. My Naturopath wants to put me on low dose naltrexone since there are findings that it reduces antibodies in autoimmune. She has used it to treat some of her other patients, including a teenage girl who had the bulging eyes of Graves and they were able to reverse it. This all sounds great but, because of my DI, I react to a LOT of medications. My DI has to come first and I am just wondering if anyone with DI has tried LDN? Any information would be great. It's so hard to manage these migraines while trying to take care of my health. It's 1 step forward, 2 steps back - over and over.
Thank you!

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lmw | @lmw | Jun 6 9:32am

In reply to @emme42 "I am sorry you’ve been having such a rough time. I know this can be incredibly..." + (show)

@emme42

I am sorry you’ve been having such a rough time. I know this can be incredibly overwhelming.

I'm trying to be thorough because I know you have a lot going on. I can share more about any of this if you want more details. I'm trying to be brief but there are several things that came to mind based on your posts.

Standard disclaimer, I’m not a doctor, and I don’t even play one on television.

1. The best advice I can give is to help get your body calm and in balance as much as you can, so that your system hopefully stops reacting to things. This helped me tremendously. I have found that if I have a reaction to anything, I need to wait a good 6 to 8 weeks before trying anything else, just to give my body time to calm back down and reset.

2. The other main piece of advice is to have really knowledgeable practitioners in your corner. Even if they’re from a specialty that doesn’t seem like it “fits." Some of my best doctors have actually been from specialties that wouldn't be the first ones that come to mind.

3. I’m wondering if you have another condition that hasn’t been diagnosed. It just seems like there’s something else going on with your body. Based on what you shared things that immediately came to mind as possibilities were chronic fatigue syndrome, orthostatic intolerance, anemia, and POTS. There's also long Covid, which is incredibly similar to chronic fatigue syndrome, and infections can definitely mess with DI, even allergies. But I know there are lots of other possibilities.

4. Has your lab work been steady? Like over the year or so? I found with my DI that even if I am within the normal range if I am jumping back-and-forth between high normal and low normal, that back-and-forth fluctuation would make me really really sick. Other times slow gradual changes in my lab work led to some really severe symptoms. I don’t know how frequently you have lab work if this would actually be helpful.

5. As for LDN, I couldn’t take it because it has milk and I’m allergic. From what I’ve read some people tolerate it very well, and some people have pretty dramatic side effects. It seems to come down to how sensitive your body is.

I know this is a lot. So I’ll stop here, but like I said feel free to ask questions.

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Low dose naltrexone, prescribed for autoimmune disorders, is formulated by compounding pharmacies. The active ingredient does not contain any milk or lactose. The compounding pharmacy will add an inactive ingredient, or filler, to the capsules of low dose naltrexone and will offer you choices for that inactive ingredient.