Is there a link between levothyroxine and rheumatoid arthritis?

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Is there a link between levothyroxine and rheumatoid arthritis?

orchidcass77 a minute ago 0 Replies

How many have developed Rheumatoid arthritis after being treated for hypothyroidism? I know hashimotos and RA are both autoimmune diseases; both of which have destroyed my body over last 2 years! However I'm noticing amongst fellow sufferers that many seem inclined towards RA after being treated for hypothyroidism with levothyroxine! A friend who had his cancerous thyroid removed privately was told (by private specialist, NHS seem to deny link) that its much more beneficial to have thyroidectomy and have a lower dose of levo as the high dose needed with a malfunctioning thyroid can cause Rheumatoid arthritis!

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  • That's very interesting. Unfortunately I don't know the answer to your question but I'm sure others on here have valuable information and I look forward to hearing the link between these auto immune conditions.

  • Well that's interesting, I have been taking Levothyroxine for about 10 years

    for under active thyroid and was diagnosed with RA 3 years ago.

    will be asking my consultant at my next appointment if there is any connection.

  • Thank you both for replying. Just curious to see if its a regular occurrence. Wonder ifyour consultant is more willing to admit a link than mine. My endo is not the best but my rheumy is great

  • I have never heard this before but I've been on Levo for about 12 years now and was diagnosed with RA three years ago. I know my GP and rheumy would say this is complete nonsense as Levo is a very good synthetic substitute for natural thyroxine and is used the world over to good effect.

    I'm not so sure myself and have tried to get my GP to switch me to NDT on several occasions. I take AdCal D3 and B12 as a result of people's advice on Thyroid UK but as a pragmatist I'm always a bit sceptical both about doctors but also about people who constantly challenge or dismiss them. I have to pick my fights carefully and can't afford to self medicate.

    I did speak to a consultant rheumy at a party last weekend (brother in law of the party boy) and he asked me of I was hypothyroid almost as soon as I told him I'm suffering from severe parasthesia. He said Hypothyroidsm often goes with Pernicous Anaemia and is fairly common with RA.

    I'm thinking that it is far more likely that this is a case of autoimmune diseases coming altogether like buses rather than Levo causing RA. People on TUK's HU are more naturopathic than those on this site can usually afford to be though.

  • I believe there is a link as I got RA soon after being diagnosed with an under-active thyroid. I've asked GP, consultant, nurses, etc but they are usually quite vague in their reply.

  • Me too!!!!

  • I'm going to try to cut out all alcohol, caffeine, soy, gluten and see what happens...and loose weight... :(

  • Good luck hope you find something you can change that helps, in my first year with ra I tried eliminating it all too and found no change in my level of disease. Thing is if you can trace it down to an allergy then it's a good thing and it's certainly worth a try for every patient x

  • I hope I have the will power to give up even temporarily things that I really like :(

  • It really isn't easy but you have o be thorough or you won't know for sure, I think once you get sick enough and the pain is too much to bare, you get to the point you will literally try anything in hopes of feeling better. I've honestly tried and researched every avenue I've ever been offered. Did every thing in my power to get better. For me nothing has worked or even made the slightest difference, there are a few things I maintain cos I feel worse without using them. Such as I take vitamin D and calcium, prescribed by Rheumatology team, I take a multivitamin too as I genuinely found it helps to have as many of those nutrients as we need, I take omega 3 oil every day. I eat as much fresh farm grown fruit and veg as we can fit in and drink lots of water. Using the elimination process I found I wasn't sensitive to any food items ...even the "inflammatory" foods don't seem to change my disease course. But you can't know for sure till you've tried. Good luck with it

  • Thank you both.. Very intriguing still

  • This post on Lupus UK today might be of interest to you also; healthunlocked.com/lupusuk/...

  • I was on Levothyroxine for about 25 years. It wasn't until a new doctor a few years ago asked me if I knew why I was on it that I'd ever thought about it. I told him I was told I had low thyroid and that was that. He just shook his head and said I had Hashimoto's. He said that a normal thyroid doesn't just stop working for no reason...hmmm, first I'd heard of that! Anyway, he switched me to Armour Thyroid instead of the Levothyroxine. I have to admit it has helped more, especially with the hair loss! But now I've been diagnosed with seronegative RA as of a few months ago. So I think that it's like Twitchytoes says, that it's just another autoimmune disease joining the party.

  • I would think the link was between thyroid disease and RA, not between the treatment for thyroid disease and RA. People with autoimmune disorders do seem to "collect" them, with many folk ending up with two or three or more different autoimmune disorders, though they don't always come on at the same time.

  • I was diagnosed with an under active thyroid and started levo Dec 12. By Nov 13 I was then diagnosed with RA. When I have questioned a link I have just been told, ah well they are both auto immune, they often go hand in hand….

  • This seems way too weird to me since I had NO symptoms of anything 4 months ago...now I have hashimoto, RA and high cholesterol???

  • The high cholesterol can probably link to the RA hun unfortunately your heart is at risk with RA, in my case it's damaged my lungs and many end up with liver or kidney disease too....it's a sad part of RA...it truly is a whole system disease. Best wishes x

  • Yeah it must bs that. Tho I do wonder how long I was suffering with hashimotos before diagnosis and treatment. Yet the ra developed after I'd been on levo several months

  • Me too!

  • Hi, I found 2 lumps the size of small eggs on each side of my windpipe. I had been to see my gp several times with a sore throat but he was unable to see anything. When I felt the two lumps and panicked he asked to see me right away. I was sent to see an ENT specialist in Toronto for a ct scan. That was 35 yes ago. I was told here by a rheumy consultant that if you have an autoimmune disease mine was hypothyroid you usually end up with RA. I diagnosed with RA about 20 Yrs ago.

    Not sure if this helps with your question. Take care, Sue

  • Thank you sue I'm glad I'm not the only one. Seems quite a lot of hypothyroid people end up with RA. I think its more as you say that Autoimmune diseases seem to gang up on us. No fun for us. Many of the symptom's coincide too x wishing you well x

  • Thank you Orchidcass77,

    I was living and working in Canada at the time, my son was about 5 year old. The endocrinologist checked on me once a year as I had to have a radioactive isotope to remove part of my thyroid as my test results were so high I would have died on the operating table. I have been taking 125mg levothyroxin ever since. Several years before, in May, I use to lose 20 lbs, which was great. not that I would recommend that as a way to lose weight.

    I wish you well with your medications, take care, Sue

  • Thanks, it's so surprising the way doctors brush off hypothyroidism as if its literally not important. I was similar I was due my second carpal tunnel surgery when I was diagnosed with hashimotos. My tsh was 96 at the time and they told me I was too ill to go under the knife. Still have not had the surgery and not sure its worthwhile now as both my hands are crippled with RA now. I don't have any better use of the right hand which I did have surgery on. X

  • Hi Orchidcass77,

    It was much better to have the isotope than the surgery. The doctors in Canada do tend to take thyroidism whether under or over active seriously. I had a friend who had surgery here in the UK came to live in Canada several years later had to have the isotope in Canada due to fragments left behind after her operation and apparently it is those fragments that become cancerous. I have only had to have a blood test each year to make sure my thyroid is balanced and in the last 18-20 years I have not seen a specialist, only RA consultant I think I will ask to see a ent specialist and find out about the connection.

    Take care, orchidcass77 keep well and enjoy the sunshine.Sue

  • Thank you that's very interesting. My end is the worst doctor I've ever had the misfortune to meet! The lumps in my throat are easy to see and feel amongst normal people, when he examined my throat he did so purely to poo-poo on my concern about them. As far as he is concerned if my tsh is below 10 and I'm taking my levo like a good girl then I should be well! I doubt under his care will I ever be well, unless by pure coincidence. Thank the lord I have a great rheumy nurse, who has ra herself cos I don't know how I'd survive without correct treatment there. It does seem in the UK the NHS just will not falter in their tough stance on thyroid patients

  • Hi there,

    Thank you for your reply, I went to my sisters before going home to let her know how my appt went. I did mention to her that I had read on here about drinking plenty of water before and whilst having the infusion. I also said how good it is that people on here pass on things like you have in regards to drinking water, etc. It is so helpful.

    Have you had any joy with getting the injections yet? If not I will let you know how I get on. I know I have to start with infusions as that can be arranged sooner, it takes awhile to organize the injections and because of my flare ups, my consultant wants me to get started as soon as possible. I have had a lot of positive feed back

    on here, people saying it is a wonder drug and they are feeling that the infusions are starting to work within 2 weeks. We know it takes 12 weeks to fully get into your system but if it starts to work in 2 weeks that's great.

    Take care my friend, I really do wish you luck with getting the injections. I will keep in touch with you and let you know how I get on in regards to the injections.

    Sue x

  • Thanks sue, yes I saw my ra nurse yesterday, I have to wait for results of blood tests to check for tb and hep then I should receive confirmation that I can go on enbrel! Woohoo could be a few weeks before I start but I can't wait! I so wanna get active again. My local lib dem mp just called round, and he says he is gonna help me get a scooter Woohoo at last I finally seem to be getting somewhere. Thank you and good luck to you with your injections, do keep in touch. Warm well wishes sent your way xx

  • Wow!! that is really good news, I think that makes 3 of us to get good news!! My young nephew (15) is involved with student politics and he goes to meetings every other week. He is now officially a Lib party official has been taken under the wings of his local MP. He goes out with him to deliver leaflets and he is taking him to the next meeting. I think it is good to get students involved.

    Anyway, good luck with getting the scooter, that should help you get around much better. I use one when I am in Canada as we like to go to the zoo and the shopping malls, far too much walking around for me so my son always organizes a scooter for me. Enjoy yours.

    Take care, Sue x

  • Hi orchidcass77,

    Just to let you know the above reply was actually for shaz, I am having brain fog whilst on these steroids. I was sending shaz and you both a reply.

    I just wanted you to know I had a bad experience with one of the consultants at my clinic but thankfully, he left soon afterwards. I was in tears that day as I had, had no sleep the night before worrying about my niece who had been taken to hospital with paralysis down on side and I was feeling very emotional struggling with no sleep and in a great deal of pain. I was told to stop feeling sorry for myself with out him knowing what I had to deal with. I would have refused to see him again. I now have a very good thorough Consultant.

    Can you not change to another consultant as they have the last say in your treatment?

    Take care, all the best orchidcass77. Sue

  • Always goof to hear of good news :) I think I will allow my end to discharge me to my GPS care. At least my gp respects me enough to listen to me. X

  • I think there is a link because I never even had any symptoms of Hashimoto's... my doctor said I have it now I'm on levothyroxine for about 4 months and she just increased my dosage from 50 to 75 ..now I'm feeling stiffness in my hands during the day now... For a few months it was just in the morning. 4 months ago I thought I was perfectly healthy with no symptoms at all of anything.. I also suddenly have high cholesterol which I never had before... I'm beginning to be suspicious of this whole thing and I'm considering getting off all the medicine

  • I know how you feel hun and I'm very sorry this is happening to you. I can't ever suggest to anyone not to take their meds because I'm not a doctor and it could be dangerous. Since I posted this two years ago I've gotten incredibly sick and disabled by the rheumatoid arthritis, I've researched lots and most people seem to feel it's that one autoimmune disease brings on others. So I can't say I've proven there is a link between levothyroxine and RA. I've been totally housebound since this post and mostly bedbound. Now the rheumatoid arthritis is in my lungs and has caused severe damage, they say the meds for the ra have also increased that damage. So looking back I wish I hadn't taken them all. But if you are starting to develop RA, you will understand, the pain is so extreme and debilitating that I truly had no other choice, I just wanted o get better and be able to function as a mother. My thyroid did settle after a long while getting the levo right and I'm on a high dose, since my lungs have gone downhill I feel my thyroid is starting to go out of whack again...I have a total of six definite diagnoses of autoimmune diseases, and several others which have been mentioned along the way but never officially written down. Plus a few that are not immune in nature such as scoliosis, cervical issues and brain damage from a traumatic birth. I really hope it's not the meds bringing this on in you, and for your sake I pray your ra symptoms subside. When I wrote this I never could have imagined where I would be now with it all. Once the hashimotos kicked in, I was almost comatose by the time it was discovered and I was severely hypothyroid with TSH 75 and I think now I'd actually had RA symptoms going back 20 years so did the ra uncontrolled cause the hashimotos?

  • wow...thank you for taking the time to respond...this is a whole new world for me. I'm so sorry so much is going on with you...I'm not sure how these forums work and I must admit I'm confused about them but it's comforting to be able to talk to others with similar stories and experiences!

  • I know what you mean, they are very helpful to talk to others in the same boat but can be overwhelming, I hope you get the answers you need and manage to live well with your disease x

  • Hi orchidcass! I'm excited this morning (I'm in San Diego BTW)..when you messaged me about allergies it made me think harder about possibilities...for about a week I have been in extra pain for what seemed like no reason except my increase in levo...but..I have been eating air popcorn nightly and putting soy sauce on it. After reading your message regarding allergies I read online that soy sauce has a high concentration of sulfites in it so last night I made my popcorn without soy sauce :( and sure enough..NO pain and very little stiffness this AM! (i put olive oil, parmeasan cheese , garlic and italian seasoning on instead)..I think I'm onto something..now Ill try to eliminate all alcohol since that has sulfites also..I remembered years ago I broke out in hives after drinking too much red wine which is when I found out about sulfites ...I quit drinking way back then but let it creep back into my life little by little about a year or two ago..hmmmm

  • Ahh interesting now if you get treated for Rheumatoid arthritis one of the treatments is sulfasalazine and has sulphites in so will have to be aware of that. Good luck I hope it is just sulphites as that's way easier to eliminate than gluten or dairy

  • I had removed 2/3 of my thyroid a year ago before I was diagnosed of RA. Is there any link between the 2? I am not sure what kind of thyroid that I had but I was told not the cancerous kind yet. I had not taken any medication for my thyroid though. When the thyroid was detected under the scan, my doctor said that 2/3 of my thyroid was affected hence he suggested to remove them immediately to avoid the whole thyroid being affected later.

  • Usually they remove the thyroid (when not cancerous) if it's hyperthyroidism I believe but then you become hypothyroidism because of not having all your thyroid so you have to take levothyroxine.

  • Wow! I am stunned. I have been taking levothyroxine for about 25 years now and have had RA for 14 years. I have never heard that and no-one in the medical profession has ever mentioned it. x

  • I still can't find any hard evidence that there is a link between levothyroxine and RA, but there is undoubtedly some link between thyroid disease and rheumatoid disease

  • I thought that would be more likely to be the case. It never rains but it pores. x

  • pours even doh!

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