Started taking levo 100 mcg'so a little under a year ago. The joint pain began slowly at first I thought I may have a little arthritis. The pain began to get worse and it seemed to spread to other joints the worst of it being in my hips. My fingers are so swollen up in the morning it hurts to get out of bed it hurts to put on my shoes and socks it's unbearable! the doctors dismiss me like I'm crazy like they never heard of levo causing this before. Then I came across this page and it was a godsend. I no longer felt crazy I no longer felt like it was in my head I no longer felt like I was going to have to suffer like this for the rest of my life. I've seen other people post that they were relatively active healthy middle-aged men and women and then overnight it was like you're 80. So thanks to all of you I am going to pursue this with my doctor and I will not let up I will be relentless. No one should have to live like this
Joint pain unbearable on levo, doctors dismiss ... - Thyroid UK
Joint pain unbearable on levo, doctors dismiss my complaints as if it's unheard of...
Fluttergirl, My sympathy to you . But what your experiencing is hypo symptoms . It just means that you are in a need of raise in your Levothyroxine . You are still not on your optimal dose . Go slow and low and hold it till your body acclimates to the new changes . Usually one raises 25mcg at a time and hold it for six weeks . Nutrients are very important too . Vit"D" Selenium, B-12/folate , Iron if you test low . Nutrients help our thyroid meds work well for us .
Run labs too with FT3 FT4, TSH,RT3, TgAb, Vit"D", Full iron panel/Ferritin .
Best wishes on your next steps .
But I didn't even know I had an under active thyroid. These symptoms didn't even exist until I started taking levo!
It's very possible that the fillers in your Levo are causing you to have the symptoms you are unfortunately experiencing . Try to have your Levo switched to another brand with less fillers or even dye free . The 50mcg ones are dye free . You might need to dose with multiple pills but it's worth it not to ingest dyes .
Hi. Do you know which is the best brand to have?
There are only four of them in the UK, and the one that works best for each person is something nobody can predict.
I'm afraid I can never remember the names of the different brands. Just start keeping notes of the brand and tablet sizes you are currently taking. When you need a new prescription, phone different pharmacies and tell them you have a prescription for so many days of Levo at a dose of whatever. Ask if they have anything different to the ones you've already tried.
Do not accept mixed brands to fill your prescription.
Once you have a brand you haven't tried before, make a note of it and the tablet sizes, and note down any symptoms which improved or got worse.
If you find after experimenting that you feel substantially better on one brand rather than another you could ask your doctor to write the prescription specifying that brand, and then any pharmacy has no choice but to fill the prescription that way. Or, if the doctor won't do it, then try to find a friendly pharmacist who will note your preference and fill your prescription with your preferred brand.
Thank you. I have been on Wockhardt for four weeks now. I have had awful headaches since starting and two migraines with Aura. I mentioned this to my doctor and she looked at me as if I was mad. I definitely don't feel any better and my energy levels are dreadful. I also have a uti at the moment so I don't think the mix of levothyroxine and antibiotics are good
No you are right I never had any problems before either.
Hello my dear, check with the Rheumatoligist,i used to suffer from this too. I was diagnosed with Graves some months ago.
The condition is called Mechanical Arthraglia, i am sure you should be exposing your body to cold.
I am so sorry about that.Mine almost made me run mad, the pain is unbearable especially at night.
Welcome Fluttergirl! Keep learning everything you can about hypothyroidism. The more knowledge you have, the better off you will be. There are some terrific books for sale on the TUK homepage. Treating Thyroid conditions really can be more complicated for some, than for others. Hang in there, and keep fighting for your health.
Hi .i have had hashi.s for years take my levo 150 like a good girl .have r/a in awfull pain .but don.t ask questions .don.t know half of what you say on this page .dyes fillers?? .but maybe its because i.m 67 .
Yes read up .teach yourself .don.t be in pain .ask questions .it is so lovely to read peoples stories and know .we are not crazy people. Or big babies. Thank you all .
Some of us are allergic to the ingredients used as fillers in the tablets (to bind everything together and keep the tablet/pill in its intended shape). You might be surprised to learn some of the things pharmaceutical companies ad in during the manufacturing process.
xx
When I started on Levo, my TSH went up instead of down as they increased the dose. As the dose went over 100 mcg I started getting awful pains in the joints.
I demanded to see an endo, and then persuaded him to put me on Liothyronine (T3), and the pains went away.
My interpretation of this was that the body was treating the Levo as a toxin, and doing what it does with toxins, ie to store them where they will do least harm, in the joints.
I didn't feel any better though on the T3, and it took another seven years to get them to let me have NDT.
As others have said, it is usually a host of things that we have to address apart from the thyroid meds. I'm currently eating fermented veggies such as cabbage and carrot, and drinking water Kefir. This is probably the most effective treatment for gut health that in turn helps sort out other problems. I haven't felt this well in more than 30 years.
Hypopotamus,
Can I ask which NDT brand you are currently taking? I remember you used to be on Thiroyd and doing well on it, and was wondering if you stick to it or have switched to another brand?
Yes, still on Thiroid. But those pro-biotics have taken me to another level.
First thing is do you have any actual blood test results? If not you need to get hold of them. You are entitled under data protection laws.
You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.
If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.
You need to know results for TSH, FT4 and FT3.
Do you also have high thyroid antibodies? You need to know. Did GP test these? If not ask that they are tested.
If antibodies are high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.
Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.
Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. Important to test these.
If they are too low they stop Thyroid hormones working.
Low vitamin D is extremely common when hypo and can cause terrible bone/joint pain
Have these been tested, if not ask that they are. Always get actual results and ranges.
If you can't get full thyroid and vitamin testing from GP
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.
As I increased my dose of Levothyroxine I began to experience pain in my hips. I had never had joint pain of any kind previously. Like you, I got validation here that it was connected to hypothyroidism and its treatment so I didn't bother investigating other possible causes. When I switched to NDT, the aches and pains in my hips resolved after 2 weeks. There was a discussion as to whether aches and pains are a result of hypothyroidism or Levo on this thread:
healthunlocked.com/thyroidu...
Your comparison of previously healthy middle-aged people feeling like they are elderly was brought home to me vividly whilst I was visiting my 80+ yo mother-in-law. It was unnerving the degree to which our movement and our perception of how much we could take on in a day were similar. 
"No one should have to live like this." Amen, Fluttergirl . Good luck getting appropriate treatment!
Hi wellness 1
I'm glad to hear that you are doing so much better 😀 Did you get a good GP and Endo to support your change to NDT or did you just source this yourself ? My GP treats my prescription like it's gold dust and it's just Levo !
I was 68 when I suddenly felt my trachea move it was caused by a large goiter growing inside my neck. Before this I was swimming, walking and doing Yoga every day/week.
I was not on any medication. After my op in Oct 2015 I was put on levo after a couple of months I began to have pains in joints that were really painful. An old injury to my ankle which I did in my 20's suddenly started to hurt. I was so bad that after 6/7 months I had to have help getting up from the floor. Non of the doctors or Endos took any notice.
I then joined this site and started to self medicate with NDT in June 2016. It's been just over 1 year now and I feel much more like my old self and now have no pain. I am aiming for 85%.
I am still learning from others on this site but I walk for 1 hour daily and I am back doing my Yoga.
Bunnyjean kudos to you for being pro active and not giving up . There is a payoff at the end of the day . There you go girl . Great take home lesson .
I was very surprised to find my vit D was so low, as I spend a lot of time outside.
At the beginning of my thyroid journey I had awful joint pain, it's horrible, and wakes you up.
Getting my vit D up and thyroid under control has cured it, within a shortish time.
Do not worry, it will get better, and with the fantastic help on here you'll be dancing around again very soon.
In the meantime straight paracetamol taken consistently for a while, ensures a decent nights sleep whilst you get it sorted, and your day times will be easier too. I was silly and didn't do that properly and suffered unnecessarily.
Good luck
Fluttergirl,
Have you tried different makes of Levothyroxine to see whether there is any improvement?
If you post recent thyroid results and ranges we can advise whether you are optimally dosed. Undermedication can cause pain.
Please also post results and ranges for ferritin, vitamin D, B12 and folate as deficiencies are common in hypothyroid patients and can cause pain in joints too.
Levothyroxine can cause problems but different makes can make a difference. If you rule out all of the above then you may need to add T3 to see whether that helps or even switch to T3 only for a few months and then reintroduce some T3. You are unlikely to get T3 prescribed on NHS and may need to self medicate.
I need to get my results from doctors. Also the doctors won't acknowledge levo as the cause of my pain. When I suggested it the PA actually snorted a chuckle & asked where I heard that & dismissed me suggesting I take up yoga.
Fluttergirl,
PA?
If you've not tried other makes of Levothyroxine I suggest you discuss it with your pharmacist.
When I was first diagnosed I was given NDT. After several months, I could barely move. Most notably - the pain in my hips and fingers was almost unbearable. It turns out that my body can't handle T4 at all. It turns into reverse T3 which makes you worse and have even more hypothyroid symptoms. Over the last several months I've been taking T3 only (cytomel). I am now at 100 mcg per day. I haven't felt this good in years!
This could be that you are allergic to something in the medication, sometimes Talc is used to bulk out the tablet, go back and ask for a different brand. This happened to me and now I'm fine.
I have quit taking the levo until I can find a doctor who will listen to me.
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