Help with LDN

[AKatieD]

Hi.

I have hashimotos and osteoartritis so was hoping ldn would help.

I have been taking ldn for just over a month and am up to 2.5mls which I take in the morning. I also take natural dessicated thyroid.

I am feeling so tired that I have just spent most of the day asleep. My hypothyroid symptoms seem to be coming back too. Tiredness is not one of my usual thyroid symptoms.

Do I stick with ldn and the fatigue will go or is it not right for me as I expected my thyroid symptoms to go towards hyper not hypo?

Anyone with similar experience?

Thanks

[loribyro]

I too have Hashimotos and take LDN. Based on my own experience, I would give it more time and perhaps increase dose to

Best Wishes

Lori4.5

[AKatieD in reply to loribyro]

Ok, thanks

[soupybp]

Are you taking the NDT and LDN at the same time? If yes, it is possible that the LDN is interfering with your NDT uptake. It may be worth trying to separate them by at least two hours or more. NDT should be taken on empty stomach (one hour before food or drink-other than water, or wait two hours after eating) away from other medication or many supplements.

[AKatieD in reply to soupybp]

Thanks for the advice. I take the ndt 3 times per day and try to take the ldn as far as possible after the first ndt, so the ldn should not be interfering with the later doses at least

[soupybp in reply to AKatieD]

Maybe worth getting a thyroid panel drawn, then, especially if the symptoms get to the point of intolerable.

[AKatieD in reply to soupybp]

Hi, yes, thanks, was trying to give it a bit longer to settle down but given current weirdness perhaps I better check

[Hashi-hacker]

Hi, I have Hashi's and take LDN - it took me a while to work up to the full 4.5ml dose. Have you hopped over to the thyroid group and posted your latest blood test results there? There are a lot of good admins and contributers who may be able to help regarding the tiredness. The usual numbers are your TSH, free T4, free T3, thyroid anitbodies, plus ferritin, vit B12, folate and Vit D levels. You might have to get some of these blood numbers privately through e.g. Medichecks x

[AKatieD in reply to Hashi-hacker]

Thanks yes, tested my blood before starting on the ldn and have a Medichecks kit waiting for next time. My levels were fine before I started ldn but was expecting it to cause hyper symptoms and got hypo ones so was a bit puzzled?

[ratoncita]

I've been on LDN for a few months now for fibromyalgia; started on 2.5 mg then after 2 months increased to 4.5. I take it at bedtime, though and sleep like a baby whereas before had insomnia frequently. Perhaps you should try taking it at bedtime if it's making you tired during the day. Winter is the worst time for me with pain and it seems to be helping this winter. My Dr said it may take awhile to fully kick in. I also have low thyroid and take desiccated thyroid which has worked very well for me; not as cold as I used to be. Also, try to get your hands on The LDN Book; I borrowed it from the library. Or, if you listen to podcasts, search LDN, there's numerous sources of info. Hang in there!

[AKatieD in reply to ratoncita]

Thanks. Yes thought I was being smart taking it in the morning as one of the reportedly problematic side effects seemed to be to do with intense dreaming but perhaps I have shot myself in the foot resulting in my being tired during the day instead. Will try night ( and the resources)!

[soupybp in reply to AKatieD]

Usually the vivid dreaming is short lived...since you have been taking it for a month, you might not experience that side effect if you shift it to night at this point.

Also, my daughter’s doctor started her at 0.25 mg taken 4x a day for 10 days followed by 0.5 mg 4x a day for 10 days...then started shifting around and combining doses. It virtually eliminates the side effects of bringing up the dose.

[Hidden in reply to soupybp]

what is her dose now? After playing around with it as you said - also .25 is an incredibly low dose - did it actually do anything to help?

[soupybp in reply to Hidden]

She is taking it for PMDD/depression. The prescribing doctor is an ob/gyn. He said that they have found that doing this very slow step-up may delay it starting to work but that they have had very few people stop taking it because of side effects. Very few people end up with sleep disturbances or fatigue.

She is at a total of 4mg split right now. Yes, .25 is incredibly low, but totaled 1mg for the day. It didn't really do anything to help her but she also didn't have any adverse affects. When she increased to .5 (total of 2mg for the day), I started seeing that she was a bit more interactive and less reactive. She seems more in control. So while she is still feeling depressed and having mood shifts during her cycle, she is more rational about it, can see it for what it is, and is able to keep moving through her responsibilities.

At the current dose, she has commented that her anxiety is increased, but she thinks that it is because there is not as much depression tamping it down. She is easier to wake up in the morning and is alert more quickly (she takes Seroquel for anxiety/depression/sleep issues/etc at night - and she was having carryover into the morning). She is less easily overwhelmed - for example, if she runs into technical issues on the computer with her school work, sometimes she can now work it out herself or at least keeps calm and gets help rather than letting it completely overwhelm her to the point that she can't get anything done.

It has also made her more receptive and responsive to counseling (in my opinion). She has been more social as well. She was invited to go ice skating by some gals in her calculus and physics classes. Normally, she would not go because she would get herself too worked up about it...this time she was able to muster through that anxiety, join them, and had a great time.

She is ready to step up another dose (they find a little higher than the usual 4-4.5mg upper end works better in their PMDD patients. We will see if that helps further.

Side note is that she is also treating for hypothyroidism...so not sure if it is the LDN itself or the LDN helping the thyroid system work better.

[Hidden in reply to soupybp]

@soupybp Thank you so much for your reply. What does PMDD stand for? and yes I am female:)). You say that 'they' find that a higher than usual dose is better for PMDD - who are 'they'?.. I do have the LDN book but as you probably know major depression and LDN doesn't have a lot of knowledge yet- I don't even know if I'm making sense - I just know that I will stay on it for another month (it's been almost 2), because I have nothing else to hope for that may help me.

[soupybp in reply to Hidden]

PMDD = Premenstrual Dysphoric Disorder It is the medical term for PMS that significantly affects daily life. Daughter's mental health issues seem to follow her cycle to a point. It is like she has underlying depression/anxiety/sometimes mania, but at ovulation it gets worse, and at menses it gets significantly worse. This took quite a bit of time to figure out, and psychiatrists were saying bipolar disorder in the meantime. It also made it look like she was reacting poorly to certain psychotropic meds...but we suspect it may have just been where she was in her cycle.

Family doc wanted to put her on artificial birth control to "see if it helped." We weren't too keen on that approach. We found a FertilityCare ob/gyn in our area. These doctors work to determine the underlying problems that may be causing female issues and infertility. First off, he found her thyroid levels were off - TSH was high (some doctors, especially in the UK would say she is still normal), T4 and T3 were at the very bottom of range. He began treatment for that.

He had her take the fertility monitoring class (how to interpret the body's signs of fertility through cervical mucus). The doc can tell a lot through this charting. Daughter figured out something wasn't right before we even left the class - she has a large amount of cervical mucus all the time...can be a sign of hormonal imbalance. We used the charting to determine timing for blood draws after ovulation and found she has very low progesterone/estrogen dominance. She started taking bioidentical progesterone during the second half of her cycle. Helped some, but not a ton, and she couldn't expand the progesterone to cover the days that were the worst because then it would interfere with her cycle.

He suggested LDN on top of those treatments. The "they" I mention are the doctors in his practice where they use LDN regularly. There isn't a lot of information out there on PMDD application of LDN, but they seem to see it balance out some of the hormones themselves - like it helps the body reset. There isn't a lot of info on mental health either.

[Hidden in reply to soupybp]

Thank you again - the article was very interesting that you sent the link for but i am confused as to how many times a day one should be taking LDN...I was wondering if contacting the person who wrote the article is possible to clarify what the dosage is....? I am so happy that your daughter is finding this helpful and I pray that she continues to do well.

[AKatieD in reply to soupybp]

Sounds like a good idea. Maybe should divide the doses then

[AKatieD in reply to AKatieD]

Taking twice a day now (as 4 times difficult with work) and that does help. Can both sleep at night and not during the day😀. Great suggestion thanks. I had not thought of it.

[ratoncita in reply to AKatieD]

The vivid dreaming, for me, wasn't problematic just for a short while seemed I was starring in my own movie. 😉 Not scary at all. Now, I do dream but not as vividly and the upside is getting such a good nights sleep! And actually wake up feeling rested. As others have said, it's short lived. Of course everyone is different. I'd be interested in hearing about your experience if and when you change your routine. Good luck!

[hvar97]

I also have Hashimotos (45 mg NP) and started on 3mg LDN the first week of January. I was on it for about 6 weeks and had a fair number of symptoms including joint pain, muscle aches - felt like I had the flu, fatigue, migraines, head felt cloudy all the time. I stayed with it during the 6 weeks but the side effects didn't go away. I stopped for a week and the odd thing was that I felt great once the side effects diminished within about 2 days. It wasn't just feeling better because the side effects were gone but better than I had before I got Hashimotos. I don't know if this makes sense but it seems like it did improve something. In consult with my doctor, the dose has been lowered to 1.5mg for the next two weeks and then we will take it from there. I do think it is having an impact but just needs time to work through the side effects.

The NP at my doctors office shared that she was on it for a month and couldn't tolerate the side effects so she went off of it for a month and then started taking it again with no side effects and is feeling the benefits for her lyme disease.

It seems to have different side effects for all of us but I think it is worth trying it.