LDN thoughts….

[MsWhistledown]

Good morning,

Could you give me your thoughts on LDN please? Those of you who are on it, have tried it and maybe not got on with it.

Would be good to hear your thoughts and experience.

It has been suggested to me by the private doctor I saw yesterday that it could be beneficial.

Thanks.

[SlowDragon Administrator]

only make one change at a time

Presumably/hopefully you have had dose levothyroxine increased by private Dr ?

[MsWhistledown in reply to SlowDragon]

Hi SlowDragon, yes! Finally have my increase! Arrived today so can start tomorrow on 75mcgs. Totally forgot to tell them to keep to TEVA brand but thankfully they are TEVA.

Doc mentioned the LDN. She had a lot of success with other patients she has treated with Hashimoto’s. I am in no rush to try it. I said I want to give the Levo a good try first and see how I get on. Just starting to do a bit of research into it.

[SlowDragon Administrator in reply to MsWhistledown]

Teva is (currently) the only brand that makes 75mcg

Vencamil (lactose and mannitol free) currently only available in 100mcg, but from August will have 25mcg, 50mcg and 75mcg options too

[MsWhistledown in reply to SlowDragon]

That’s good know! Thanks

[Bertiepuss]

I tried it for 6 months, didn't do anything positive or negative for me personally so have now stopped. I think it's worth a try as some people do get benefits, just titrate up slowly over a few weeks.

[MsWhistledown in reply to Bertiepuss]

Thank you Bertiepuss.

[TiggerMe Ambassador]

Tried it for 3 months and it just gave me a constant low grade headache 🤷‍♀️

[MsWhistledown in reply to TiggerMe]

Oh that’s a shame TiggerMe. Thanks for sharing your experience.

[Sparklingsunshine in reply to MsWhistledown]

I use jt for Fibro and have found it very helpful. I cant say if its affected my thyroid in any way as I dont appear to have AI thyroid disease. Just a very dysfunctional gland.

[MsWhistledown in reply to Sparklingsunshine]

Thanks Sparklingsunshine. That’s interesting. I have read it can be beneficial to those with chronic pain. Glad it is helping your Fibro.

[Sparklingsunshine in reply to MsWhistledown]

I'm extremely med sensitive as I have Ehlers Danlos and I've tried all the usual Fibro meds and hated them all. They were either crap or the side effects were awful. I thought I'd try LDN and it suits me. I've been on it since December 2022.

[MsWhistledown in reply to Sparklingsunshine]

That’s good to hear. I also suffer chronic migraine and neck and shoulder pain due to bulging discs/disc degeneration. I am on Nortriptyline (tricyclic antidepressant) for the pain from both. It kind of works but I don’t enjoy the side effects or the fact long term use may cause dementia! So, have been wondering if it would be beneficial for those problems as well? 🤔

[Sparklingsunshine in reply to MsWhistledown]

I was diagnosed with chronic vestibular migraines 2 years ago, personally wrongly I think, but played along. Nortriptyline was one of several migraine meds I tried, along with Amytriptyline.

I'd already had experience of both in the past due to having Fibro, but this time even a low dose was intolerable. They gave me headaches, ironically, and a racing heartbeat as well as the shakes. All of which quickly resolved once I was off them. I've certainly found my pain is more tolerable and mood has certainly improved.

[Bertwills]

I’ve been on LDN for 2 years now. I get it from clinic158.com. They have a link with a chemist in Glasgow who send out meds by post. You can self refer but will need blood test results to show them ideally.

The main thing is to start very slowly & build up to the full dose of 4.5mcg over 3 months. I’ve heard of doctors not following this method but it is the one that gives the best results.

I found it wonderful to start. I have fibromyalgia & hypothyroidism & my stamina increased greatly on LDN. Much less pain too. Then I was ill with a virus for 2 weeks & I didn’t feel such a benefit afterwards. But every time I get fed up with taking it & stop lots of symptoms I’d forgotten about start coming back so I start again.

I use sublingual drops as my stomach is upset by swallowing drops. This maybe caused by an excipient. I’d definitely give it a try. It’s relatively cheap & can be very effective. I take mine in the morning to avoid sleep disturbances. You can’t use Co codamol whilst on it. Let me know if you’d like more info.

[MsWhistledown in reply to Bertwills]

Thanks Bertwills, for sharing your experience. It sounds very positive. I’m definitely carefully considering trying it. Maybe not just yet. But in the near future.

[Bertwills]

Yes, I’d give it a go. Nothing to lose really. It may be transformative for you. There’s lots to learn about it.

[FallingInReverse]

It’s on my short list too, but I’m nit trying it until I get my Levo/T3 optimized.

I’ve also got other things to do first - magnesium, cortisol testing, HRT… maybe even gluten free… all before I try LDN.

This is not a recommendation, just how I’m approaching it. Bert wills has given excellent advice above and in previous replies to me as well.

[MsWhistledown in reply to FallingInReverse]

Thanks FallingInReverse. I’m doing the same. Trying to get to an optimal level with Levo first and see how I feel. I’m interested in LDN from an autoimmune perspective, which are prevalent in my family. Many have started with a thyroid problem and then gone on to get rheumatoid arthritis. My sister is crippled with it. So, it’s on my near future list of next steps.