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Diabetes Insipidus - Treatment with LDN?
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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Hi, @scarless, welcome to Mayo Clinic Connect.
I'd like to invite @farmgirl, @idumas, @emme42, and @144000 to this discussion as they have discussed Diabetes Insipidus on Connect and may be able to share their experiences with how they have managed their diabetes insipidus and if they have had any experience with low dose naltrexone.
@scarless, you mentioned you have had issues with reactions a lot of different medications as a result of your diabetes insipidus diagnosis. What did your naturopath have to say in regards to a possible reaction to the naltexone?
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2 ReactionsHonestly, my naturopath isn't sure. I reacted to some supplements she tried to manage my Hashimotos (they put me into hyponatremia) so I think she is a little nervous to try anything else at the moment. Last I heard from her, she was reaching out to her resources to see if anyone had experience treating an autoimmune form of DI. This is generally my problem. Diabetes Insipidus is not an overly common disorder so practitioners tend to treat the most prominent medical issue at the time without regard to my DI. They don't always understand that it has to be first at all times. Then my docs get puzzled and are like, "oh, huh, that's odd". It's tough. I have to be pushy about my needs a lot.
In my research about LDN, I haven't seen anything that would indicate it affects the pituitary or renal function at all but wanted to see if anyone in the world wide web had any experience with it 🙂
Thanks @JustinMcClanahan for the help with resources!
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1 ReactionI have a lot of issues going on because of what I believe are all long Covid symptoms. One of which, is my endocrine system. It shot craps within a month or so after my 1st, and worse case of Covid. I'm seeing a functional med doctor for this and she has me on LDN. My thyroid is staying in check with no other medication other than this. It was all over the place before. I would by hyperthyroid one week and hypothyroid the next. I stay within acceptable range now. It is worth a shot. I read a little on it and it often helps with a lot of different things.
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2 ReactionsI really appreciate your response @dandoss63! In my research on LDN, I've seen that it can be helpful with Long Covid symptoms. I manage most of my thyroid symptoms from Hashimotos with diet but I'm sure the LDN would be helpful with that as well - I still get heart palpitations and the occasional body chills or overheating. I know in those moments, my body is swinging from hyper to hypo in terms of my thyroid. I am giving it more thought. Again, thank you for your input!
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2 ReactionsI 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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2 ReactionsHi Emma! Thank you for such a thorough response. I'll address them as you posted.
1. I do give myself time after I have reactions to things. As far as meds, it's only things that could affect my pituitary gland or anything to do with my fluid balance. I have some supplements my previous Naturopath gave me that I've been on for about a year and half. Overall, those have helped me as I haven't been "sick" as most people experience it. Like no colds or things like. Disclaimer: I got Covid from Pike Place about 6 months ago, but I meant common colds. So my immune system seems to be up in that respect. The only other way I've been able to "calm" my body down is with AIP Diet. I had minimal headaches and my inflammation seemed to be down. But if you've ever tried it, you know it's so tough to stick to. I've tried returning to it, but every time I try to adjust my diet back to super healthy - my sodium reacts because it doesn't have enough salt. I am taking salt tablets when that happens but I try not to do them too often. Usually only in extreme "I will have to go to the ER if this migraine doesn't let up" cases.
2. I have gone through a few doctors and a couple Naturopaths these last two years because I did have some of them being dismissive and telling me things were "normal" and not listening to me. So I 100000% agree with you there. I have a really good Endo MD now, a good Naturopath who is trying really hard, and on the hunt for a good PCP with my insurance.
3. I could have something that isn't diagnosed. That is a possibility for sure. I'll talk to my Naturopath about that my next visit. I don't think Long Covid is the issue for me. I got a baby variant last March and I only had severe symptoms for 3 days. Never got a headache, loss of taste/smell, or anything super severe. And no new symptoms came up after. Felt the same.
4. My lab work has not been steady. Normal for me is around 137 - that's my sweet spot where I'm not voiding a crazy amount. Anything higher and I'm drinking so much water. But my labs have been jumping around a lot under 140. I will feel really sick, go get lab checked if I able, and a lot of the time it will pop up "normal". I'm sure you know how frustrating that is. I'm glad I don't go into the danger zone frequently but I wish I had labs for my doctors to see that my sodium levels are not normal. I can feel that they aren't. I've had this illness for 36 years - I know when it's acting up. Haha. As far as the rest of my labs, things are pretty consistent the last year. Thyroid levels, Inflammation Tests, Cortisol, Iodine, Etc. My Naturopath orders a lot of tests every 6 months or so.
5. I did not know LDN had milk in it - I'm not allergic but I am lactose intolerant. Can you elaborate on the dramatic side effects you've heard about? I haven't found anything in the research I've done except vivid dreams, insomnia, and some loss of appetite - but it seems like they pass. I am trying to figure out if they will affect my DI specifically.
I appreciate you taking the time to talk @emme42 . It's nice to talk to someone who has DI. I've literally only ever met 2 people with DI. One was a friend that had to take a pill every once and a while (lucky) and a patient when I was a CNA but I didn't talk to them about their DI because it wasn't appropriate in the moment.
Hey there Scarless,
I'm just starting LDN, still initial dose. A couple of interesting dreams, but nothing else.
I really wanted to write to you to say "my sympathy!" You have been through a lot. I'm so impressed with your knowledge and your perseverance. You are inspiring me to get back into my own fight; I'm sort of resting now, hoping and waiting for the LDN to kick in.
I'm really glad you found a "friend" here in Emme with the same disease. This site is great.
Best of luck to you! And to Emme, too!
For those of us that aren’t familiar with acronyms what is DI, DDAVP, and LDN? Thank you.