Low dose Naltrexone

[Rosie_P]

Hi folks,

Has anyone tried low dose naltrexone for Hoshimotos? Thank you for your time! 😊

[puncturedbicycle]

Yes, have been on it for maybe 18-24mos. Feel free to message me if I can help.

[Rosie_P in reply to puncturedbicycle]

Thank you so much for your response. I was recently diagnosed with Hashimoto's and the doctor gave me some information on this. He said there isn't that much known about it. Did your bloodwork improve i.e. thyroid antibodies after taking this? Did you have any side effects? One doctor put me on iodine. Then another doctor said that iodine could stimulate the autoimmune condition adversely. 🙁 Anything you could share would be helpful. Thank you!

[puncturedbicycle in reply to Rosie_P]

Wow, I've never heard of a gp recommending ldn, how novel. Is this an nhs gp?

I can't say yet if my antibodies are better. Due to an unfortunate turn of events (I was taking ldn capsules last time I was tested and they weren't working) I doubt the tests were of much use but I intend to test again very soon (am arranging phlebotomy this evening) so I hope to know more in a week or two. I'm going to do a liver function test as well just to keep an eye.

I do think the ldn is somehow optimising use of my thyroid meds. Since taking it my tsh is always v low, and I have lowered my dose a few times only to find it is still low when I next am tested. (I did eventually go hypo on a low dose of levo after a period of time but I may have become paranoid about hyper symptoms and lowered the dose myself, I can't really remember.)

There are side effects, generally every time you raise the dose. I felt fluey (aches and nausea) for about a week at first. Since then I have raised by smaller increments which seems better. The only issue now (I'm on 3.5mg) is a peculiar kind of constipation which is very annoying. I won't give you the gory details unless you want them.

The only other thing I can think of to say is that I would recommend the sub-lingual drops. I detested the linctus - it is sweet and sticky, gets everywhere and I never took it without grimacing. I then tried the capsules, which did not work for me. For whatever reason they were not effective. The drops may cost a little more and they are bitter but they go under your tongue so you don't really taste them. The smell and taste remind me of the tiny orange baby aspirin I was given as a child, which is preferable (to me anyway) to the cough-syrup-like linctus.

Hope that helps. But do feel free to ask if you have any questions.

[Rosie_P in reply to puncturedbicycle]

Thanks so much for the info! The DO that I am seeing right now says the latest research recommends the low-dose naltrexone at 4.5 mg. The other doctor (MD) that recommended the iodine supplement works for BodyLogic. Hormone experts, supposedly. I live in Colorado Springs and he is in Denver. I'm not going back to that MD anymore. Unbelievably expensive and they don't take my insurance. Thankfully I still have a functioning thyroid. So I'm not on any medications right now. I'm trying to salvage what I have by keeping my antibodies low. I really appreciate your time thank you 😊 !!

[puncturedbicycle in reply to Rosie_P]

Interesting to know what docs are recommending in the US, if only to know ldn is not regarded as loopy by everyone.

Good to know that 4.5 is the current recommended dose. What I read over and over is that the same dose doesn't work for everyone. I aim to raise the dose every so often to see if I have an epiphany at a higher dose but the bowel issues make me reconsider.

Yes, iodine is a bit controversial. I used to see a functional doc in the US who suggested I take a very small amount of iodine, eg using iodised salt, just to ensure I was getting some in my diet.

Good luck. Keep me updated if you do decide to try it. I'd be interested to hear how you get on with it.

[Rosie_P in reply to puncturedbicycle]

Thanks so much I will!! 😊

[AdeleMalcolm]

Hi Rosie-P. I'm new to this community having joined HealthUnlocked because of a diagnosis for PBC (another autoimmune condition) which affects the liver and it appears to frequently be the case that sufferers have other conditions like hypothyroidism. The reason I'm responding is I've just seen a response to a post on the PBC side of things where a contributor mentions a LDN users group on Yahoo, Dudley Delaney's website and Elaine Moore's book (all new to me) plus a note to look at a Dr Burton Berkson who is an authority on diet and supplements to control autoimmune conditions. Might be worth a shot - I'm not on LDN but it might be something for me to look at re my PBC anyway. Best of luck. Adele

[Rosie_P in reply to AdeleMalcolm]

Thank you so much for this information!! 😃