I have been treated for Hashi since I was 18 (20 years), taking various doses of thyroxine in that time. Over the last six years I have changed my lifestyle drastically and been on an intense journey of healing and exploring functional medicine routes to find more wellness.
Nine months ago I started on LDN and I have seen incredible results in my skin, hair, energy, brain fog etc. My antibody levels have dropped drastically.
My thyroxine dose has already been changed twice in this time on LDN and I feel like it needs changing again. I’m waking early, feeling like I have a racing heart (hearing racing in my head/neck even though my heart rate isn’t too elevated) and with increased levels of anxiety.
Does anyone else have a similar experience of LDN use and it’s effects on their thyroid meds?
I have GP tests booked in next week and I plan to do a private panel as well.
any thoughts appreciated 😊
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PurpleDonkey
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I take LDN for Fibro, not thyroid, I've never had raised antibodies so I'm guessing my UAT has another cause. However LDN does regulate the immune system and I have read that those with autoimmune thyroid can often end up needing less thyroid hormones whilst taking LDN.
How can they need less thyroid hormone? The thyroid and the immune system are two different systems. And even if LDN does regulate the immune system it can't repair the damage already done to the thyroid.
They are all interrelated. The thyroid system is very closely linked with the immune system, and especially here in my case of it being autoimmune disease
Not shooting the messenger, just asking questions. You could for example, give us a link to where you read that.
The immune system may be closely linked to the thyroid, but my point was that you cannot repair the damage done to a thyroid by autoimmune thyroiditis and will therefore always need the amount of thyroid hormone replacement you need, and I cannot see how taking LDN can reduce how much you need, given that it cannot repair the thyroid.
I also have autoimmune thyroiditis, and my thyroid is completely dead, now.
It is a common thing with people taking LDN that they need to reduce their thyroid meds over time - other than the link to inflammation, I'm not sure on the mechanisms, and not entirely sure even medics and researchers know yet because the research is still new, but it's common enough for it to be a warning when you're prescribed it, that you need to carefully watch your T3 and T4 levels, so it's something observed by patients and prescribers. May be as simple a thing as it improving a person's uptake of hormones, e.g. the T3 is making into the cells more effectively. Think people who end up on LDN tend to have multiple systemic issues and likely don't have the best absorption and conversion (myself included).
Reducing antibodies does not mean you have reduced your Hashi's. Antibodies are the result of the disease, not the cause. And the level of antibodies has nothing to do with how much thyroid hormone replacement you need.
My understanding is that the reduced antibodies suggest there is less autoimmune activity in my thyroid now. And that my thyroid function is therefore better and so I need less thyroxine.
Yes but not with LDN. I was given some strong immune modulaters and had to reduce thyroid meds twice. There are several angles of work with the biggest being chronic inflammation which is a known cause of inhibiting thyroid hormone function on many levels. Hence we aim to reduce thyroid antibodies which signifies the amount of damaging (auto) immune response.
Glad LDN has worked for you. I had it prescribed last year but then was told not to use it with the curcumin I take as they reduce the same inflammatory pathways. Amazing isn't it.
LDN is something that I've been reading around over the last year. I don't have a diagnosis of hypothyroidism but was prescribed levo for tiredness after a partial thyroidectomy.
I believe my problems are probably due to Acquired Hypothyroidism as I was severely deficient in iodine but I have been diagnosed with some autoimmune skin conditions; Patch granuloma annular and Lichen Sclerosis. Although I have never had high in range antibodies they have always been low but I still feel there could be an autoimmune aspect to my thyroid issues.
The LDN forum on healthunlocked wasn't particularly active the last time I checked. Did you get your LDN prescribed privately or through your GP?
I doubt very much that LDN is readily prescribed via your GP, although there are large clinical trials taking place abroad, in Denmark I think,to assess the effect on Fibromyalgia. Hopefully if the results are good then maybe the NHS will see its way to prescribing LDN for conditions like MS, CFS, Fibro and Hashis, to name but a few.
At the current time though LDN is seen as off label, experimental, not enough clinical data available to verify effectiveness. I think attitudes in the US are more open and its much easier and cheaper to access. I did approach my GP in a letter, explaining my reasons.
I've tried all the usual Fibro treatments,most of which are pretty crap, ineffective, addictive and in some cases expensive for the NHS. I dont currently take anything for Fibro as I had dreadful side effects. However I had researched LDN and felt it was worth a try.
I was refused by the NHS so now use Roseway Labs who compound their own medications. They offer a private prescribing service with a GP who will prescribe if necessary. I've been on LDN since December 2022.
You can PM me for more info on prices and so on if you want to 😁
Can I pick you brain, 🙏 I was diagnosed with graves in 2019 ( very high antibodies) it was eventually remove due to toxicity very high T3 and T4 suppressed TSH.. (thyrotoxicosis).
In 2005 I was diagnosed with chronic fatigue syndrome and fibromyalgia after a gp sent me to Newcastle, I was discharged back to gp care for medication, unfortunately he prescribed antidepressants and opioids 🤦♀️.. which I was on till 2015 being rushed to hospital bleeding from back passage and stomach (colitis ) hospital doctor took me off both medications and urged me to speak to my gp again , he only recommended the same medication which I declined.
Recently I received my second diagnosis of primary hyperparathyroidism (2020) the first being in 2004).
I had a pet scan F18 done in Aug this year to identify the rouge para gland in the report it says
Noted: hyperdense nodule of approx 13mm x 12mm in right thyroid bed which shows low grade uptake on early imaging which persisted on delayed images (this may reprisent thyroid tissue remmant/recurrent??? ).
It's the next paragraph that's confusing me...
Low grader symmetrical uptake in the tonsils and posterior nasopharynx is likely inflammatory.
Low grade tracer up taken subcentimeter bilateral cervical lymph nodes is likely reactive in nature.
Physiological tracer uptake in the pritruitry, saliva glands and liver.
I've been sitting here going over this report since I received it on sep 17th I've often wondered if my immune system is outa wack🤷♀️ although I have no idea what this report means🤦♀️
It could be. I'm not medically trained obviously but chronic inflammation is often the root cause of many illnesses and women are particularly prone to AI conditions and reactive immune systems.
Yeah was thinking that, I do have ostiopeania and ostio arthritis and I'm pretty sure I have rumertoid arthritis to, but gp won't test for it just says it my ostio.. 🤷♀️.. I keep having what I can only describe as a feeling of high temperature, and sweating with utter body pain, I put this down to the thyroid medication T3, and when I was on it T4.. But I'm unsure now, I have a phone appointment with the endo who requested the scan, so I will be asking questions 👍 thanks for your input ❤️
Sounds like LDN could be really helpful for you I don't know what other things you are doing to rebalance your immune system, but there's lots you can do with diet, liefstyle and supplements, rebalancing gut hormone
I've spent a small fortune on immune system products, unfortunately because I have gut issues (colitis /lactose intolerant) I find I can't stomach most tablets, I've tried those good bacterial drinks in the supermarket that ARNT cheep but nothing helps.Endocrinologists have tried me on vit D but that crap stuff.. Brilliant blue and yellow 🤮 I got the spray with k2 but that was worse, it said on the back.. Can cause a laxative effect 🤦♀️ so give up.. But this endo I'm under in Liverpool recommended vitabotics vit D.. So far I've managed to take some.. But the t3 is still giving me bad diarrhea, cramps and gut inflammation 😩.
My surgery couldn't give a stuff... I'm in constant body pain daily, sweat, fatigue ect but all any gp wants to do is give me antidepressants and opioids.
One thing I will mention, when I was taken into hospital with the stomach /gut issue (colitis) i was on a steroid drip, then after 12 days sent home with 4 months supply of steroids... It was the best 4 months of my life.. No pain, no sweating, I even managed to go bk to the gym.. Then I had to come off them, slowly reducing the dose... Everything came back 😩 and I've been left like this ever since.. Even my graves disease didn't connect with my gp.. It being an auto immune illness 🤷♀️
I hear ya. I was on steroids in various forms for years - oral, creams etc. They only suppress the immune system though, not treat the root cause of dysregulation/imbalance.
It is a slow process to bring it back into balance and needs a multi-pronged approach, consistently. Just think how many years it has been out of balance... but our bodies are always trying to bring us back to balance - we just need to find the right conditions to do so.
For me, things like removing sugar and processed foods, going dairy and gluten free, testing my gut health and rebalancing what was out of whack, supplementing (I did this all under the guidance of a functional nutritionist), sorting out my stres and lifestyle... LDN has been the biggest help in all of that for me, really cementing all the other changes I have made.
It has been a six year journey of coming to undertsand all the ways in which I was dysregulated and out of balance - and really going against the medical paradigm of 'you're broke, there's nothing we can do'. Because there is so much we can do with the right diet, lifestyle and providing the right conditions. It takes time, patience and blood, sweat and tears. Good luck!
Low dose Naltrexone. Naltrexone in high doses is used to help alcholics and drug addicts kick the habit as it helps control the endorphin response. However they noticed low doses were very helpful for AI conditions and others like CFS, Fibro which have proved very difficult to treat.
In a nutshell when taken in low doses, either in liquid, capsule or sublingual drops, usually at night, it suppresses the endorphins your body normally produces as you sleep. The body detects this and when the LDN wears off it causes a rebound effect and produces a lot more endorphins, the body's natual painkillers and feel good hormones.
Hence users can feel less pain and a greater sense of wellbeing. I've personally noticed less pain, less stiffness and more energy. LDN has a very good side effect profile, vivid dreams being the only one I've really noticed.
LDN also helps regulate the immune system, which can be useful for autoimmune conditions. I started off on liquid @ 0.5ml a day and very slowly increased. I'm now on 4.5ml capsules which are more cost effective. The final dose for most conditions is between 3-5ml daily. Hope that helps.
Have you ever been tested for dysautonomia? Being unable to control body temperature, excess sweating or no sweating, digestive dysmobility, low blood pressure, POTS. Even eye pupils failing to contract in the light.
All these things are basically your body's autopilot functions that dont require conscious control by us, certain conditions can cause autonomic dysfunction, like Fibro. I feel for you as I have Fibro, although I think mine is more likely Ehlers Danlos and dysautonomia is certainly something I have.
I have had 2 eye strokes.. One in 1997 and the other diagnosed on sep 29th 2023, the eye consultation said I have inferior hemiretinal vein occlusion, with inflammation in the optic disc.Although in the letter she wrote to the stroke clinic for an urgent appointment for me, they wrote back asking if there was a typo as this condition is first sent to hematology not the stroke unit.
I was back to the eye clinic on Oct 9th where nothing as changed, then, consultant did referral to hematology.
Hematology wrote back saying we think this lady needs FUTHER investigation ie.. Blood tests with yourselves 🤦♀️ I had a full blood panne done on sep 29th with the eye clinic🤦♀️
But one of the blood tests they recommend was a auto immunity test👍.. I recived 2 FUTHER letters on Saturday morning from the eye specialist, where she as wrote to my gp asking me to be sent to the stroke unit as an emergency, stating the clotting behind the eye.. Inferior hemiretinal vein occlusion with optic disc inflammation and thrombosis) I'm waiting for my gp to respond🤷♀️
I have taken LDN for 2 years and found it very beneficial. It certainly does alter the amount of thyroid hormone you need. I quickly went over range when taking my long established dose of T3. I’m taking a break from it now as I’ve found its effectiveness has reduced. I think this is fairly common. I’ll return to it in a few months.
I would recommend trying LDN. Mine came from clinic158.com in Glasgow. You can self refer with any private blood tests. You then have a phone consultation with a prescriber. They do warn you to keep checking hormone levels as you’ll likely need to reduce. I needed to use the sublingual drops as my stomach couldn’t tolerate the usual liquid. It’s very reasonable in price.
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I don't know what other things you are doing to rebalance your immune system, but there's lots you can do with diet, liefstyle and supplements, rebalancing gut hormone
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