I’m not sure if my last post was very visible so I am re-posting the question here. I hope this is ok!?
Since taking T3, I have been feeling so much better, however, I now feel I must drastically reduce or stop taking Levothyroxine for a while. This is because a few months after starting Levo I developed dystonia. It affects my face, eyes, neck, shoulders and stomach muscles and seems to cause my muscles to remain in a state of tension a lot of the time. It affects my life and job every day, it has caused a huge loss in revenue, causes me a lot of discomforts and is triggered when I speak. I have seen an ENT, voice therapist and neurologist. No one could confirm what it is as it doesn’t seem to be textbook. I think silent reflux might be involved but working on this issue alone has not resolved it. The neurologist said it could be something to do with my thyroid issue but really had no idea but ruled out MS or anything sinister. I have also read that medication can cause it in some people. Dystonia has been my worst issue since finding out I had Hashimotos. I'm currently taking 125mcg of Levo, however, when the GP dropped my Levo down to 75mcg of Levo last year, although my FT3 was below range, the dystonia was a lot better. It could be a coincidence but the only way I can find out if the Levo has something to do with the dystonia is to cut right back or stop taking it completely.
I understand that some people do not tolerate levothyroxine and I wondered what sort of issues Levo caused them?
If I make the move to try this, how should I go about it? Taper off or just stop taking it? Am I likely to need to increase my T3 to compensate? I would appreciate any advice, thank you so much!
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limonene7
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limonene7, Sorry you've not had much response to your question here so far.
I think you might well be on the right track in thinking that levothyroxine could be exacerbating or even causing the dystonia symptoms you describe.
As you've already explored other avenues via an ENT, voice therapist and neurologist, perhaps it's time to go back to your GP for discussion about reducing your levothyroxine dose and adding in some liothyronine. (This may well necessitate referral to an endocrinologist).
Hopefully others will read your post and offer their thoughts.
Hi RedApple, thanks so much for your reply! I’m currently on 125mcg of levo at 89% through range and Tiromel 2 x 6.25mcg at 34% through range. At the moment, I would prefer to do this without my doctor as I don’t want to rock the boat and I don’t trust them when it comes to my thyroid health anymore. I feel this is something I need to do on my own at least until I know where my medication and levels need to be. My plan is to use Medichecks Advanced Thyroid Test every 6 to 8 weeks and will look to increasing my Tiromel if results suggest it.
I think the main thing I am keen to know, is whether I can just stop taking Levo or whether it would be better to taper off it slowly?
I saw your post last night but outside my area of experience- however as RedApple says looks like you have explored other avenues- RedApple’s suggestion seems sound - the next logical step. If they start trying to treat your blood tests rather than you and your symptoms - take a step back and look critically at their advice. Keep in touch with the forum. If they start telling you you are ‘normal’. Run! LOL!
I have some general comments/analogies on Drs interpretation of blood results on my profile (my story). Good luck 😊👍
I would be very careful about stopping T4 - you can feel well for a while and then it all goes wrong and you can feel the worst ever.
Speak to your GP about the dystonia - there are clinics for this in the hospitals, where they give very careful Botox (its not actually botox but I forget the name) to stop dystonia, and it works a treat. You go every 3 months, the botox takes around 10 days to work and slowly tapers off after around 8 weeks. They will very very carefully up the dose over time (sounds familiar?) until the symptoms resolve. The injections do sting a bit (depending on who does them) but the bliss of not twitching and winking at strangers is worth it.
I think limonene7 was consider dumping levo because she is currently on combo, but has only started to feel well since the introduction of T3 and last year Doc dropped levo from 125 to 75ug. The dystonia symptoms improved a little, if I’m reading it right. 🤔
serenfach, This is interesting and useful to know. However, if I've understood it correctly limonene7 doesn't have a firm diagnosis of dystonia. She wrote in her post that 'No one could confirm what it is as it doesn’t seem to be textbook.'
So I wonder whether her GP would be able to refer her for such she treatment without a formal diagnosis from a neurologist.
Most dystonia is not "diagnosed" as such, although some GPs will test blood for toxins. I was just told "if you have muscle spasms, the botox helps" and it does. This can be any area of the body. My GP refered me straight to the clinic, where on the first visit they did take a medical history, but after that it was just run on appointments. No treatment while the clinics were shut of course.
Thank you very much for your reply! I have previously been told by my voice therapist that I can look into trying botox if I want but for me that is going to be a last resort. The thing is if Levo is the issue or part of the issue, I believe it would be important to correct that first. I am concerned that if it is causing my body this dystonia it might be causing other issues under the surface that I don’t even know about.🙂
A proportion of members (including myself) have suffered neurological conditions after medicating Levo such as vertigo, Ménière's Disease, twitching/jerking movements, even muscular pain but I can’t remember exact mentions of dystonia. Some neurological disorders are started by triggers in people who are just pre-dispositioned to gaining them when conditions become right.
You have room to adjust T4 & T3 doses. It's not recommended to go cold turkey with Levo but you could try manipulating T4:T3 ratio. NDT could be another option. It’s my own preference, finding it less harsh than synthetic as hormones bound to thyroglobulin appear less immediately available for breakdown. You have to replace missing thyroid hormones with some form.
TPOAb are high and dystonia can be autoimmune related although I have no experience of this. Everyone’s immune response triggers/reactions vary according to genetics, environmental factors, other health conditions, etc, and one condition commonly leading the way to others.
Vit B12 may become high if we supplement too much or it becomes unusable due to MTHFR issues, in which case homocysteine will be high. Have you had this tested?
Supplementing 100-200mcg Selenium is beneficial in reducing TPOAb’s and aids thyroid hormone conversion. Vit D and fish oils are known to reduce inflammation (vit D has been shown to influence regulatory T cells, which in turn modulate and balance the TH-1/TH-2 response (lymphocytes associated with Hashi).
Dystonia is common in Multiple Sclerosis and research has been ongoing into the relationship between MS & Vit D levels. My cousin has MS and takes vast amounts of Vit D under supervision.
A huge part of the immune system cells live in an area called GALT (gut associated lymphoid tissue) just under the intestinal lining surface. This should contain good bacteria (flora) critical for helping immune cells mature but when absent, will cause the immune system to dysfunction. Do you have any gut issues?
Hi radd, thanks so much for forwarding all that info! It is very interesting to hear that levo can cause neurological conditions in those predisposed. Yes, adjusting the T4 to T3 ratio is what I am looking at doing. As it happens, a few weeks ago my Mum and Dad had the advanced Medichecks blood test as a general health and nutrition check and my Mum was only 28% through range but all her other levels were really good and no sign of antibodies. Thyroid disease all comes from my Mums side but it skipped my Mum with only a short period of hyper in her early twenties. I guess if I were to take after my Mum that my T4 would be way too high at nearly 90% but I realise its all trial and error and I might not take after my Mum at all. I already supplement with selenium and eat oily fish regularly and don’t have any noticeable gut issues. My B12 is quite high do to supplements but I only take methyl B12 and methyl folate so I’m hoping I shouldn’t have a problem there. Thanks to your post, NDT is something I will definitely bear in mind. To begin with I think I am going to taper gradually down by 25mcg a time and test my levels every 6-8 weeks. Here's to hoping something good comes out of it!🙂
I didn’t say Levothyroxine per se can cause neurological problems. From my own observations these unwanted conditions can be just as easily caused by the secondary symptoms resulting from Levo not working effectively.
A common reason on this forum is low iron (although not my own) which encourages higher RT3 thus preventing good conversion, and utilisation of both FT4 & FT3 hormones, but it could equally be high bodyily-inflammation, (micro)nutrient deficiencies, or other & the list is endless.
Thyroid hormone control our nervous system, ie cognition, motor skills, memory, emotions, etc, and I think the more active T3 hormone is less influenced by conditions such as anaemia, but equally holds its own strict requirements such as adequate insulin/balanced sugar levels, and enough protein to exert positive cellular effect.
This is not to suggest T4 is any less important as I need good T4 levels just as many members do, but to suggest looking further afield rather than focussing solely on Levo as the perpetrator. If you reduce your Levo meds you will need to increase T3 meds or will end up under medicated.
If you are supplementing VitB12 & folate it better to take a Vit B Complex to enable a good even spread of B vits.
Thanks ever so much for that radd! Yes, I am taking B complex as part of my supplement routine. I worked on optimising my nutrient status prior to introducing T3. Ferritin v good now, very careful with diet and inflammatory foods and have low CRP. Nothing in the blood tests is currently showing up as something that could be responsible. The dystonia started showing itself when my Levo was increased to 100mcg in the first months of starting it and has not improved with higher T3, even when I was a bit over range a couple of months ago. The only thing that’s ever shown a noticeable difference is when I happened to be on a lower dose of Levo. It could be a total coincidence but I’ve run out of options now and Levo is the only thing left I know of to rule out.🙂
So why do you need to stop Levo completely when you saw improvement with a dose reduction?
It is usual for symptoms to lag behind good biochemistry and dependant upon duration of remaining undiagnosed it can take some people years to recover as depleted bodily systems have to catch up. When I introduced T3 to my Levo, I was still seeing improvements five years later.
I can appreciate the dystonia symptoms must be hugely distressing and probably quite frightening but without more dose T4/T3 manipulation and time, it will be difficult to establish later your true requirements if you eliminate Levo so quickly, and then T3 didn't work out.
Also your profile says you practice '7 rounds of 5 day water fasts' which would be wholly discouraged with any thyroid issues let alone when trying to establish your right dose. Thyroid hormones (especially T3) requires steady blood sugar & insulin levels.
Hi radd, I don’t know if I need to stop it completely but I didn’t know what the correct path would be to follow since Levo takes a lot longer to raise and lower in blood than T3. All you guys have said it’s much better to lower it slowly so I am going to do just that and see if I start to see improvements. Yes, i am desperate to try and get to the bottom of it. Aside from the physical and emotional distress, it is destroying my career and I’ve been struggling to keep my head above water financially since this condition. I haven’t done any water fasts in many months but I can only say good things about those that i have done and I have continued to monitor my blood work throughout and have not seen any negatives. The fasting I did not attempt until a year after the dystonia started and have only ever felt better from being low carb and doing intermittent fasting. Regardless of what science suggests, I personally have felt and seen only benefits from doing these things but I do understand and appreciate why you mention it.🙂
I think as a general rule any changes you make to the levels and source of your thyroid hormones T4 and T3 should be done gradually and carefully... testing bloods and observing symptoms as you go along .. and allowing long along enough for each change to properly settle in before considering the next move . Long enough is usually at least 8 weeks and longer may well be better (12 weeks+) as often improvements in symptoms continue to happen gradually once stable on a new dose.
The main purpose of the HPT axis (the thyroids ability to increase T3 production independently from T4 production , and the deiodinases ability control the speed of conversion from T4 to T3 ~ Via TSH feedback /feedforeward) seems to me , to be trying to maintain the stability of the body's fT3 levels as a priority .
So logic tells me that making massive/ sudden changes to our T4/T3 sources/ levels is not a smart thing to do to our body's regulating system .
So i can see the logic in lowering your Levo and replacing with T3 to see if this is what is causing your issues.. but i think you should definitely NOT consider just stopping the Levo all at once, and seeing what happens next.
Obviously if you didn't replace the missing T4 from Levo with an appropriate amount of T3 (to make up for the T3 you currently get out of that T4) you would become undermedicated , but this may take a few weeks before you notice, often we see when people stop levo all at once, they are OK for weeks, then crash horribly and take many months to get well again after they restart . (and sometimes they never get back to the level of 'health' they had before they stopped suddenly and left themselves undermedicated for weeks/ months )
So I think you should make these changes slowly and gradually ... how 'slowly' and 'how much T3 instead ?' ,i honestly don't know ..... but this sort of thing:
ie. reduce Levo dose a little ( 25mcg?)for a week or two to allow T4 levels to fall, than add a tiny bit more T3 to compensate ( 2.5mcg /5mcg ? i dunno sorry )..... then wait 6 /8weeks, retest bloods, consider symptoms ... then maybe reduce levo some more ... then increase T3 a little ( using bloods as a guide to how much ).. wait 6/8 weeks ....retest .....etc .
That sort of thing.
(however , I may be being a bit over cautious...i usually am, lol .. but all too often i watch people on here making big changes in very quick succession, not waiting anywhere near long enough to see the results on their symptoms and then getting totally 'lost' and having to start all over again)
tattybogle makes a good point - but if you are changing with help from your doc they would issue caution and time to monitor changes. Tatty took a while to find a sweet spot and had a fair bit of resistance as did I at one point. We cannot at any stage allow ourselves to be subject to the misguided management of our conditions when we intuitively know that it’s wrong. The biggest hurdle you may face is getting doc to support you. I keep my fingers crossed.
Hi Limonine, I recognise your symptoms in a way. I am hypothyroid and over the years have had some very odd muscle things going on at times along with ligament tightening and discomfort.
I recently had Covid, luckily quite mild but afterwards for over a month, I have had severe muscle cramps and twitching that initially failed to respond to anything I tried.
I did read that post -Covid could affect muscle behaviour in some people so my strategy was to drink more fluid and add a little Himalayan salt to my litre water bottle. It certainly did help me but even then it took around four weeks to abate. I also upped the amount of Magnesium I was using.
When I saw your post, my first thought was Vitamin B12……A deficiency of this vitamin can produce similar symptoms to those you describe but I would imagine you or your Doctor would have tested that already? I am not in any way medically qualified so I would urge you to get tested for B12 and Folate levels before you take any on a regular basis.
Gut problems of the sort you describe may very well interfere with the absorption of many nutrients including all the vitamin B family which amongst other things ensure the proper function of the nervous system…..so may be worth investigating.
I would not advise to do any of the above without testing levels first and suggest if you do go down that route, to post the results on here to get some feedback.
If you do prove to be deficient ….There are some very good Vitamin B complex and B12 sources you could try. Once again ask on here for recommendations and you will get some good advice on the best ones to go for. Most standard vitamin preparations are pretty pointless in terms of quality and composition.
Thanks ever so much for your reply! I've actually done all you recommend but so far no joy. I've never had Covid and I didn't really have any major issues until I started taking levo and then within a few months I started developing this dystonia. I have never felt the levo did anything for me except make my symptoms worse and lowered my own T3 production. My latest blood results are fairly good but I def do not have B12 deficiency. These are my results from last week...🙂
latest blood results =125mcg levo and 2 x 6.25mcg Tiromel.
This is just a suggestion, and I might be leading you up the garden path. Please note that I am not medically trained.
Electrolyte disturbances/imbalances and having too much or too little of any of them can cause tics and make various muscles twitch and jerk and fail to relax.
In my personal experience the things that help me with cramp and tics are improving my magnesium levels, and a small dose of a potassium supplement can help too. I take magnesium quite often, but potassium only when I am having a problem - and I keep my doses small.
Although iron is not an electrolyte low levels can also cause cramp and twitching.
I know for other people it can be an issue with too little (or possibly too much) calcium - but too little usually implies their vitamin D is too low, and too much implies there might be a problem with the parathyroid glands.
Some people go on a low salt diet and take it too far - that will affect both sodium levels and chloride levels.
I don't know anything about phosphate.
My problems with electrolytes used to mean that I could sometimes get eyelid tics and twitching, I had lots and lots of problems with cramp, and I often found it impossible to relax my shoulders in bed. I also had a problem with something called "benign fasciculations" in my calves - search for that on Youtube - some people actually film theirs and upload it, which I think is very weird.
For my own problems I use the following supplements when necessary and I've learned by experience which one(s) I might need when a problem with cramps or other muscle problems arise - but everyone would have to do that for themselves:
Dioralyte - officially used for replacing electrolytes (sodium and potassium) in people with diarrhoea or problems with lots of vomiting, but it is useful in some people for muscle tics and cramp too.
Magnesium - I use magnesium citrate but there are many other choices of magnesium supplement:
Note that people with severe kidney disease should not supplement magnesium at all except under the supervision of a doctor. In people with healthy kidneys excess magnesium is excreted in the urine, but if the kidneys don't work then magnesium may build up to dangerous levels.
Potassium - there are various options
Cream of tartar (potassium bitartrate), and potassium bicarbonate are the ones I'm familiar with. I never take more than quarter of a level teaspoon in water. Potassium supplements are also available on supplement websites. Since potassium is involved in lots of very important stuff going on in the body, including regulating the heart rhythm people need to be cautious with this.
Sodium and Chloride - Obviously this can be supplemented by putting a small amount of salt in water and drinking/sipping it.
Note that for supplementing both sodium and potassium together there is the previously mentioned Dioralyte and also low sodium salt from supermarkets e.g.
I can't help on the best way of supplementing calcium - I've never needed it. Nor can I help with low phosphate.
Bicarbonate can be supplemented along with potassium by taking a small amount of potassium bicarbonate in water - please note that most potassium supplements I've tried taste vile (in my opinion).
...
Warnings - Always supplement electrolytes very cautiously, and they should only be taken when necessary, not all the time. I only ever use quarter of a level teaspoon in water of any of these powders.
The only exception for me is that I take magnesium citrate fairly regularly.
Thank you so much for this! Unfortunately I have already tried the electrolyte route taking O.R.S electrolyte replacements as well as magnesium and high does B1 which can remedy some types of dystonia but none of these things has worked. The dystonia I have is not like jerking and twitching it can be extremely strong and violent. I have been working on it now since the beginning of 2020 and have done huge amounts of research and tried everything I could find might help accept ruling out Levo. 🙂
That is really interesting! Especially as quinine is antibacterial and antiviral. I wonder if this has something to do with it. I am going to give that a go, thank you so much for forwarding that!!🙂
Hello, I found your post because I was searching dystonia and Hashimotos. I've been struggling with this, too, since my TSH went way up in November. I'm on only T3 because I can't seem to handle T4. But what I've found is that the more inadequately dosed I am, the more head twitching I get, which a neurologist recently diagnosed as dystonia.
If you have an issue with T4 med converting to T3, I think it might cause the problem. If it converts to Reverse T3, then taking the T4 could leave you with less net T3 in your body.
You might check out Paul Robinson's work on thyroid issues. He has a book called Recovering With T3 and two others. He also has a blog and a Facebook group.
I hope you're feeling better now. I'm still working on raising my T3. Take care.
Thank you very much! I am still struggling with it. It is triggered by certain types of speech ( things that are more irritating to my vocal chords) and it's mostly noticeable when I'm working as I work with my voice for a living. I did have a twitch on my left side involving my neck/shoulder when I was under medicated. I have optimised all the nutrients that are very important for thyroid hormone metabolism suggested on this forum and the twitch seems to have gone away. I have one of PR books and that's been very helpful too. Thanks again and all the best!
Hi, this showed up in my email feed this morning for some reason. How is your dystonia? After I raised my T3 med higher, mine went away. I'm not on any T4 med. I saw the neurologist last summer for a follow up appointment and he changed his diagnosis and said I don't have it after all. I hope you're doing well!
Hi! I am really pleased to hear you have got rid of it, thats' awesome! Unfortunately I still have it. It didn't start till after I started thyroid meds which at that time was levo only. Its interesting you say you are on T3 only as I am on both T4 levo and T3....Please can you tell me how bad your dystonia was and do you think it might be worth me trying T3 mono therapy like you?
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