Hi, I just started taking 25mg of Levothyroxin in January this year. The side effect I'd like to ask about is sore, stiff legs and knee joints. It's definitely caused by the Levothryoxin, and I think it may be due to water retention..? Does anyone know how to reduce this problem, or perhaps I should try something else, like Armour or..? Any ideas? I also find that it seems to affect my heart rate, which has become a bit more irregular. Thanks!
Sore legs on Levothyroxin: Hi, I just started... - Thyroid UK
Sore legs on Levothyroxin
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Avoapp
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GlowCoachAdministrator
Welcome to the group.
The likelyhood is that you are not taking enough Levo to alleviate symptoms which is why you are suffering.
25mcgs Levo is just a low starting dose. 50mcgs is a more usual starting dose, we then retest every 6-8 weeks and titrate the dose upwards unti TSH is at or just below 1 and symptoms gone.
Please share your latest blood results for members comments. I stringly suspect you need to push your GP for the next dose increase.
Hi GlowCoach, thanks for your message. As the symptoms only appeared when I started taking the Levothyryoxin, I don't have much hope that they'll disappear if the dose is increased, but it's good advice anyway and I'll get in touch with my doctor, thank you.
Buddy195Administrator
As GlowCoach outlines, adverse symptoms are likely due to your thyroid medication not being optimal. 50mcg Levo is the usual starter dose for Levo. Please take into account that optimal may not be the same as what GPs consider ‘normal’ or ‘within range’. To offer further advice we need to see copies of your thyroid blood test results (eg TSH, FT4 and FT3), with laboratory ranges.
Have you had key thyroid vitamins checked recently (ferritin, folate, B12, Vit D) as having these optimal supports thyroid health.
Hi Buddy, thank you. I didn't have the sore legs, sore knee joints or the bloating before I took Levothyroxin. I tried tablets first, but reacted to the fillers, so then went off them for about ten days. In this time, the side effects disappeared. Then they returned when I restarted with liquid Levothyroxin, which I can tolerate much better generally than the tablets. Yes, I have had many tests and those levels are fine. When I next have a test, I can post the results if needed at that time. Thank you, I'll get in touch with my doctor about the side effects.
I had the same problems on Levothyroxin. It got to be that I could hardly get in and out of the car and was stiff with swollen ankles. It never resolved and got worse until I eventually had to stop taking it and am now on T3 only which is not ideal but I don't get these side effects although my knee joints are stills bit dodgy. It is all in my bio. As Glowcoach and Buddy195 advise, much will be revealed in your blood tests. Very best wishes to you.
I didn't have the sore legs, sore knee joints or the bloating before I took Levothyroxin. I tried tablets first, but reacted to the fillers, so then went off them for about ten days. In this time, the side effects disappeared. Then they returned when I restarted with liquid Levothyroxin, which I can tolerate much better generally than the tablets.
Levothyroxine doesn’t “top up” your own thyroid hormones…..it replaces it because pituitary “sees “ the levothyroxine in your system and TSH reduces…..meaning your own thyroid makes less hormones
25mcg will already have lowered your own thyroid hormone output but is nowhere near high enough dose to offer replacement
I have had many tests and those levels are fine. When I next have a test, I can post the results if needed at that time
Standard STARTER dose of levothyroxine is 50mcg and dose is typically increased as fast as tolerated, in 25mcg steps up after each blood test
Unless extremely petite you are likely to eventually be on at least 100mcg daily
On liquid levothyroxine do you split your dose or take as single dose
ALWAYS test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endocrinenews.endocrine.org...
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
When adequately treated most people will have Ft4 and Ft3 at least 50-60% through range when testing as outlined above
ESSENTIAL to also test and maintain GOOD vitamin D, folate, B12 and ferritin levels
Exactly what vitamin supplements are you taking
Thank you for all this helpful info. That really explains why, when I went off the first Levothyroxine I took, which was in tablet form, I felt absolutely dire, really awful. My thyroid was clearly no longer producing enough hormone. I did wonder, as I didn’t feel that bad before I took the tablets. Then I started Zentiva liquid Levothyroxin.
Thank you for the testing info. I have done private tests before and am due another one shortly, a full thyroid panel. I’ll get that done.
Thanks again!
Sadly we thyroid patients soon learn that "fine" in regard to any of our results, including our vitamin and mineral levels, is never acceptable. Always ask your surgery reception for a copy of your test results. Have them email them to you or go in and pick up a copy. It is your right to have them and they prove invaluable as you negotiate your thyroid journey. Keep a comprehensive file.
They will tell you your vitamin D is "fine" if you hit 30 on your result, but for a good thyroid hormone environment, we need it around 120. It's like that for all the vital vitamins and minerals. B12, folate, ferritin and vitamin D. If these are not very good optimal, the hormone you are swallowing won't work very well.
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I reacted to acacia in one brand of tablets. The brand substituted lactose with acacia.
I have sore and painful legs especially in my knee joints when I am under medicated on Levothyroxine. I know this because I tried to come off of levo as I felt so much better without it. I was ok for 3 weeks and then the soreness and pain was so bad in my legs, also my shoulders I had to go back on it.
If you started 25 mcg in January (that really is such a tiny dose) your doctor should have been increasing dose every 6 to 8 weeks. Until you reach your sweet spot.
Thank you to everyone for all the very helpful replies
Hi Katherine, I used to get those symptoms (aching body and achy shoulders and knee joints), in response to eating gluten.
I did go gluten free once Avoapp, sadly it did not stop my aching joints and bottoms of my feet was bad too. It did stop my tummy bloating so much. The only gluten I eat now is real Italian pasta and anything baked using non fortified organic French or Italian flour. Otherwise I am mainly meat, fish and eggs, cooking in beef dripping, lard, butter or ghee, organic vegetables very small, used mainly as a small side dish.
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Good morning they sound very much like the symptoms I was suffering , before starting 25cmg of levothyroxine aswell asothers •Weak limbs
•Unsteadiness
•Blurred Vision •Cloudy head
•Loss of concentration
•Hair loss
although some of my other symptoms improved, it was nt until my dose was increased to 50mcg that I noticed any improvement in my limbs and legs. The Stiffness has definitely subsided , I have also found I can manage on milder pain killers.
However initially I did experience palpitations, fortunately a couple of days after increasing, I had a consultatation with my Cardiologist, so mentioned my concerns . She advised that it should subside once my body had adjusted to the new dosage. After a week or so that was actually the case and although 50cmg is still quite low I have found my quality of life is starting to improve.
Please If you are ever concerned about ANY health issues it doesn't harm to speak to your GP or even a pharmacist .
We are all different so it's quite possible to react differently to various meds or even experience different symptoms of an illness.
I was diagnosed with Hashimotos 28 years ago after having a goitre removed.
Until recently I have kept very well .
have you tried a different brand or even liquid levothyroxine
You may have what's called pre-tibial myxoedema, or thyroid dermopathy. There are several descriptions and images online - including a photo of legs looking just like my own! It looks like lymphatic swelling, but it's not the same. It s an inflammation of mucus under the skin. Some of the info online says it's associated with Graves disease - but Myxoedema used to be a common medical term for hypothyroidism so I think it's quite common for those of us who are hypothyroid.
Doctors seem quite dismissive of it, mistake it for weight gain, or lymph. I find it's tender to touch, painful if massaged, putting legs up makes no difference. I haven't found any good cure, but as you've been told, getting your thyroid dose optimal can help.
I have also tried taking NAC N Acetyl Cysteine daily, as I read online it might help ( it apparently has mucus-busting properties). It takes ages to show changes but I have had some periods when I can see bones in my feet again. I have had it for many years, so it's hard to shift. The last 6 months my system is out of whack again with some B12 absorption issue, obviously affecting my thyroid function, and the swelling has returned. I hope once I've got everything sorted, everything will improve again including the swelling.
I would advise the exercise that has proven to be effective for my leg pains, which is the combination of vascular and well as thyroid yoga and cycling. I would recommend particular yoga. The objective is to increase the blood supply to your legs .
I have been raking levothyroxine for over 20 years and it is quite a high dose 125, 150 alternate days. Every so often I get bouts of severe leg cramps, particularly at night. My elderly but wonderful family doctor told me to drink Tonic Water (Quinine), (not the slimline version) early evening and it makes a difference,
Interesting! Taking magnesium supplements daily and trying tissue salts (magphos) before bed might perhaos also help with the cramps. Also taking enough sea/rock salt daily, depending on whether that's ok for you. That's what I'd suggest might be helpful..I have often had restless limbs at night and ocasional cramps since starting Levothyroxin and those are the things that hep.
Thank you everyone for all your helpful messages!
I’m currently taking Zentiva liquid Levothyroxin. Has anyone tried Tirosint-SOL, another brand of liquid Levothyroxin?
Very few people in the UK will be taking Tirosint as its very expensive, as is liquid Levo. I'm sure that getting a blood test and a dose increase will improve how you feel. You may well need further dose increases over time to feel well, plus getting all key vitamins to optimal levels - ferritin, folate, B12 & d3.
Thanks. I’m fortunately getting the Zentiva on the NHS, though my doctor hasn’t heard of it but found it when I asked. Yes, Tirosint is expensive but I am thinking of trying it for a few months to see if it makes a difference, but only if increasing the dose doesn’t help.
I have been having those things checked with private tests, but not recently so will check again, thank you. (Need to win the lottery at this rate! All these sorts of things add up:))
Is Armour a good option at all, for many people?
Armour is a last resort option due to cost (you wont get it on the NHS) but also it doesnt suit everyone.
You're really at the very early stages of hypo treatment and a long way off wondering about other options. Get your TSH below 1 and all vitamins optimal, test TSH, FT4 & FT3 and see how you feel then.
I understand, and I will. I have been working on it for 2.5 years and managed to slow it down. So I didn’t need to go onto Levothyroxin until January this year. I tried out the Paleo Autoimmune Protocol for almost a year, and am still on a mainly Paleo diet. I’ve had lots of tests and taken lots of supplements, reduced stress (some of the time), had lots of therapy to help reduce emotional load, taken up cold water exposure, and become a Laughter Yoga coach, but the disease still progresses. It may be triggered by heavy metal toxicity in my body or by stress (unavoidable sometimes).
I have thought about chelation therapy but don’t know much about it or where to do it or whether or not it’s hugely expensive.
Once you have got to a point of requiring Levo there really is no healing unfortunately.
Have you had thyroid antibodies tested? The NHS only tests TPO type but provatey you can also test Tg type.
Hmmm... when I was put onto Levothyroxine in 2008, within hours I suffered intolerable pain in my legs when I went out walking, when I raised it with my GP at the time, I was told it was a coincidence and later that it was caused by intermittant claudication (narrowing of the arteries. When I pointed out that I didn't suffer from pain before starting on the thyroxine, I was and still am, ignored.
I might add that at the same time, thyroxine left me with 'brain fog' for about three years, perhaps due to the fact that because my thyroid had been underactive for such a long time (maybe 5-6 years without treatment), my body had adjusted and the sudden influx of T4 knocked my system out of whack? All I know is, that about three years later after I started on thyroxine, I woke up one morning and it was as if a veil had been lifted from my consciousness.
Wow, that’s quite a story. Glad you’re feeling better now, and I hope that you find a way to help the sore leg issue. Will work on that myself too!
Was feeling the same way but once I got up to 75 for 6 - 8 weeks and I continued to exercise things got better, much better. I think it was because I was too low.
That was my experience too , sadly I was still rehabbing from knee surgery and didn't put it all together and allowed my complaints to get ignored . Now after 7 years off what I now consider as "poison" I still have residual . I also developed low grade elevated BP one year after being started on Levothyroxine and was placed on 2 additional "poisons" for someone who had been a runner in high school and a devoted walker since then it was a huge and pin filled insult. I was on that junk like 4 3/4 years when I weaned off . I use Dandelion root and Hawthorn Berry daily and try to see my lymphatic Therapist nearly once a month. All that stuff messes with your body's normal function and really does leave you with long term damage
Sorry to hear that. Do Hawthorn Berry and Dandelion root help with a underactive thyroid? How do you support your thyroid?
No , but Dandelion is a diuretic and helps to excrete fluid and Hawthorn Berries help to dilate blood vessels making circulation better and working together it does help BP and decrease fluid accumulation.
Oh I see, it’s good that it works.
Sore and aching legs are a symptom of hypothyroidism. 25mg is a very low dose; 50mg is the usual starting dose. I'd also ask for calcium, vitamin D and Magnesium to be tested. Hypothyroidism can cause osteoporosis and one of the symptoms is aching legs. Hypothyroidism can mask another endocrine disease called Hyperparathyroidism which causes raised calcium. The symptoms are similar to Hypothyroidism. Optimal levels of Vitamin D and magnesium are essential for the conversion and absorption of levothyroxine.
Ok, thanks very much for that info. I do find it wierd though that it's when I take Levothyroxine that I get sore legs. I didn't have that problem before, so how could it be hypothyroidism, is what I ask myself.
I've been on Armour for more than a year and my right leg started becoming sore when I sleep at night. I don't know what the connection could be. I don't exercise as much as when I was pre-diagnosis for Hashi's/Hypo. It's not "restless leg" syndrome either. I am determined to try a multi-day water fast to see how my diet has been affecting my ailments and if they are lessened, but I need to work up my nerve as I am a cookie addict and I'm afraid of the withdrawal symptoms from sugar. Best of luck with your Thyroid journey.
Thank you I've been working on avoiding sugar and have found that a teaspoon of coconut oil is helpful for reducing cravings, or a glass of water. There are other things too, will look for my list of them! Best of luck to you too
I found that my spasms were histamine related. Paid attention to wine and other things that vary in my diet and no longer have spasms or leg pain at night
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