hi. I posted this question in the thyroid group last night - and well to put it politely- they aren’t quite as warm and welcoming as you guys are.
I had Graves’ disease in my 20’s. Once it was treated I was out on levothyroxine. It’s mainly be stable for 20 years, with just a few changes to the levels.
however I had a call last night to say it’s wildly over active at the moment. That’ll explain the scary blood pressure and statins. But the free t3 is in good range.
however, I’m concerned it’s due to meds and the steroids for my ra. I’m not longer on steroids (but was for 18 months) and had a steroid injection a week before my blood test. In currently being treated with leflumide and influximad.
does anyone have ideas? Experience of similar?
also another question- am I’m being cynical or fed up - but are the side effects of all the ra treatments worse than the disease? Do they get better in time?
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Tealblue2
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Hi, I'm on thyroxine too for hypothyroidism and been on it for about 35yrs. Over the past couple of years my dose has been up and down as my tsh fluctuates all over the place. It makes life difficult especially when my dose is low as I just can't function. I also reached out to the thyroid group and they are very knowledgeable but very technical too. They did give good advice about taking thyroxine at a set time, away from any food or vitamins etc. They also advised on what vitamins to take.
My weight fluctuates a lot and if I lose or gain weight it always impacts my levels. Could this apply to you?
I'm on Orencia and have been on steroids in the past but personally I've not noticed any link between my rheumatoid meds and my thyroid levels.
Thank you. Yes I’ve lost about a stone so far this year. But that’s just what I put on whilst on steroids. I’m far heavier than I have been in years, and I’ve been on 200mg for about 12 years. I thought it was all menopause related….
I can't see how it's RA related but it may be that it's another facet of auto immune as it goes mad before it fails completely. Mine did over 40 years ago and I've never had any issues at all. I wonder have you have T3 , T4 and TSH tested as they routinely here don't do T4 and its caused me all sorts of issues as the dose of LEVO was reduced to me being a cold zombie level and it took months to sort out. I found that the thyroid group appeared to be more American based and went against the standard NHS of LEVO but pushed for another type of medication which was very strange.
Thyroid can be up and down and my GP told me what to say to any young GP going by numbers, " I am fine, I'm a patient not a set of numbers so no you can't change the dose again as its been the same for over 30 years and works for me" It does work.lol Plus the information about when to take goes out the window when your in hospital which I took up with our GPs pharmacist at my medication discussion last year. She laughed and agreed they are checking people take stuff "properly" but don't do it at the most important time when your seriously ill in hospital. She then said I'll forget the rest of the questions have you anything you want to know? I said no as the RA Consultant, the Nephrologist and the Urologist ask the same questions every 3 months so I'm sick of this and am beginning to get a persecution complex. I'm sorry but don't know about Statins as my blood pressure is fine except when dealing with the over complicated NHS systems. I hope you can sort this out. x
I think it’s not in my experience as after all the medication is just putting things back to normal. I found LEV great for my RA but we are all different. When I had the AKI and very high dose steroids it was never an issue and I had blood tests for months and the T3, T4 and TSH were constant. I have Hashimoto’s Thyroid so autoimmune but before it failed my thyroid did go mad and I lost weight etc, then it obviously had the opposite effect in complete failure.
Hi Tealblue2, I see what you are getting at…whether any RA meds affect your thyroid function/meds? The ‘medication’ you take for your thyroid isn’t actually a medicine…it’s replacing the thyroid hormone you don’t have any longer, therefore essential for you to function. Your rheumatologist will know what you’re taking for your thyroid situation and therefore will take that into account to ensure there’s no contraindication involved. To put your mind at ease, do discuss your concern with him or her. Best of luck going forward.
I use the thyroid boards and they can be good when you ask a specific question, but they are very focussed on blood tests and vitamin levels. Incidentally you didn't mention steroids on your question over there, it might be helpful to update your query and put that you were on steroids.
I have just searched using the term 'steroid side effects and thyroid'. With the very strong caveat that this is just a search and I personally have no medical knowledge, it looks like steroids can affect the thyroid. They can affect the conversion from T4 to T3 and the pituitary production of TSH.
I also looked up Leflunomide and influximad in the same way and the summary at the top of the results said no reports of leflunomide affecting thyroid and nothing at all appeared for influximad. Again, I have no medical knowledge.
I would contact both your rheumy and whoever manages your thyroid and tell them about the side effect on your thyroid and ask for advice.
As for your other question, once you get on the right treatment for RA then the treatment can be very effective, but finding one that both works for you and has limited side effects can take a while I am afraid.
No I don’t think I was as clear on that forum. And I was a put put off because I know all about the range levels and vitamins. But my concern was really the affect of the other meds and is everything being blown about.
I did the same google searches. I usually find lots of helpful information. Am just trying to avoid having to contact everyone again. Have done nothing but this year - it’s just one thing after another at the moment- it’s certainly taking it out of me.
Internet searches are odd, some days I look for something and can't find anything useful, a week later I put in what I would swear are exactly the same terms and a load of useful web sites pop up.
You must have been unlucky because they are normally a really good bunch on there. I joined in 2012 when I had Graves and couldn’t have survived without all the amazing support I got from them. I still go on to pay back the support I got. They tend to be very quiet at the weekend so don’t write them off.
“but are the side effects of all the ra treatments worse than the disease? Do they get better in time?’
Can’t answer your first question as know nothing about Graves, but first the second bit definitely not! This disease can be so scary left uncontrolled and can attack just about every part of your body - organs like heart and lungs, joints, skin, eyes, veins.
It’s very easy to forget what things were like before all these new drugs, and the number of people who ended up in a wheelchair. Yes, that still happens but my rheumy says that she hardly ever sees the type of bone damage she used to.
Thank you. Maybe I did need that reminder. I had the disease for 5 years undiagnosed so it definitely ripped through me (lungs, eyes, heart) And still is. The disease alone is horrible. It’s just the meds seem to make symptoms worse - they add nausea, diarrhoea, flu like symptoms, extra fatigue- without a huge amount of benefit, as I still have joint pain and many of the other symptoms. I guess I’m still waiting to find my magic remedy
Steroids are the strangest drugs. They can do so much good but can cause so much havoc to your body. Where I work they are used to help treat cancer, yeah I know, who would have thought? They do however cause serious issues to blood sugars, cause serious weight gain at high doses, cause cushionoid syndrome and can cause paranoid symptoms, metabolic issues along with the worst sleeplessness you can imagine. Not drugs to be taken likely but can help with so many things like pain in RA. As someone who also is being treated for hypothyroidism I am aware that a lot of people have multiple autoimmune issues at once. The drugs do cause issues but the alternative is not great as I've said before I feel lucky because I seen the old way people were before these treatments and definitely don't want that. Hopefully you will get the right drug and be off steroids for quite a while which will level you out. There is someone on here who has had major experience with steroid side effects try searching for her Runrig01.
Interesting question. I had Graves disease roughly ten years ago( fastest, and scariest way to ever lose weight!). I was put on carbimazol. It went into remission for a while and then bounced up again. Interestingly my blood pressure has been high ever since, despite supposedly being in remission. You have reminded me to get it checked again, as I've just had an IM steroid.
I believe my hyperthyroidism was cause by a (non RA drug) A known side effect. That seemed to have triggered a whole host of autoimmune issues.
Yes I think there definitely is potential for interaction, though don't know what exactly the connections are. I have hypothyroidism and RA, and am treated with levothyroxine and liothyronine.
When I was first developing RA, my TSH went up (it had been stable for years), and that continued even after I'd started treatment for RA. When I asked about the connections, the most I could get by way of explanation was "well it's all autoimmune, so it's probably linked". Initially the GP wasn't comfortable increasing my levothyroxine dose to address the high TSH because my blood pressure had also increased due to the steroids for RA (I was taking tablets daily and had had a systemic injection as well). I'd never had high blood pressure before. That meant the fatigue and other symptoms were particularly difficult to manage for a while.
After a couple of months my blood pressure calmed down enough to be able to increase my levothyroxine dose, and things started to slowly improve. I assume the effects of the steroid injection had worn off by then. If steroids are messing with your TSH and thyroid hormones, perhaps those effects will ease off as the injection does.
It sounds like what's happening for you is a bit different from what I had, because my TSH went up whereas yours has decreased. However, if your T3 is in range then that doesn't sound like a 'wildly' overactive thyroid - but I'm not a medic, so please don't take my word for it. I know the test results can be affected by timing and when you took the test in relation to the last medication dose.
I do recall that before I added liothyronine to my thyroid treatment, my T4 could sometimes be borderline high even though my T3 was very low, indicating poor conversion (and thyroid symptoms). That sounds like a similar pattern to what you have, so maybe what Jennifer has said above about T4 to T3 conversion could be part of the picture for you?
I don't know what to suggest but it sounds like you do need some follow up with your doctor to try and unpick all of this. The interactions between symptoms, medication effects and side effects are so complicated sometimes. If the steroids are having an effect, then this may settle as the injection wears off, so maybe a re-test of thyroid function would help to clarify what's going on? Have you had high blood pressure before, or does it seem to be a steroid side effect for you?
It is exhausting trying to work it all out sometimes, especially when dealing with difficult and potentially scary symptoms. Crossing my fingers you get some good medical support to work out what's going to help you.
Hi! I have both RA and Hashimoto's (now hypothyroidism), and your question is a good one. I have had thyroid issues for over ,30 years, and only recently has my thyroid gone crazy needing quite a jump in strength of my Synthroid medication. I was also wondering if one effects the other as I just recently had to increase my steroids to fight an RA flare. I have no idea of how much one would effect the other, but I suppose it does. I will keep an eye on this thread and maybe someone will have similar experience. I am very interested to know the answer to this question. Sorry the other group wasn't too welcoming. It happens. I had to leave groups before because some members were so rude.
I have also been taking Thyroxine for underactive thyroid for about 30 years. Earlier, at the age of 21, I was diagnosed with overactive thyroid and underwent a partial thyroidectomy in 1956.
At that time I was told I would probably be fine without medication until around the age of 60 when I would need, perhaps, to start regular testing as the thyroid could become underactive.
That is exactly what happened, and I've had various strengths of thyroxine since then. RA kicked in in 1967; I was told it was not surprising! But I've never had any side-effects or any sort of difficulty until I started a biologic drug - Remsima - which upset the levels. Since stopping the biologic, quite recently, things are settling down. The methotrexate which I also take for RA (28 years) has never interfered with the thyroxine, or vice versa..
Steroids have not been a part of my treatment for RA except the very occasional injection.
As for side effects of drugs used for RA treatment, all drugs come with some risk and that has to be evaluated against the benefit. But these days, there is a wide choice and although it can be tiresome chopping and changing you should be able to find a suitable drug. Don't put up with inflammation - that leads to irreparable damage.
Thank you. I also had over active in my 20s. But radio active iodine worked too well and I’ve been on Levothyroxine since. Stable since I had my daughter 12 years ago.
I’m just intrigued. So much inflammation and different meds must do so much to our systems. Much of it good, don’t get me wrong, but feels like being push through a washing machine sometimes.
Interesting, Tealblue, that you had the radio active iodine to treat the overactive thyroid. Perhaps that was something to do with the time you had it. In 1956, operations on the thyroid to reduce the activity were considered to be more exact; although I was in hospital for 6 weeks prior to the op while the thyroid gland reached a point of “being ready” for the op. I was told that they could calculate the amount of gland to remove accurately. And in fact that is what happened. No medication was needed afterwards - until 40 years or so later when the gland became slightly under active.. I had the op at St Thomas’s Hospital, London.
Hello, commiserations. I have been taking levothyoxine for 30+ years due first to an overactive thyroid then needing replacement as my thyroid was knocked out completely.
In the year leading up to my RA diagnosis in 2023 my thyroid function blood tests were all over the place, so much so that the lab said I must not be taking my thyroxine correctly, I had not changed anything. After diagnosis I had 3 treatments with steroids and Methotrexate plus hydroxychloroquine. Within 3 months my thyroxine levels were back to normal for me. So, I think it was a combination of high inflammation levels and the steroid treatment for me rather than RA meds. ( I resisted reducing my thyroid treatment)
Hello. I think the meds we take can indirectly impact on our ability to absorb Levothyroxine as effectively perhaps by impacting on our ability to absorb certain vitamins and minerals eg Vit D and B12.
I was diagnosed with Hypothyroidism in around 2002, misdiagnosed with RA in 2011, rediagnosed with Sjogren’s (seronegative) in 2016 and am now correctly and definitively diagnosed with Systemic Sclerosis. I have been on various doses of Levothyroxine for all of this time and I’m now in charge of my own dosage within reason.
I’m on Mycophenolate and Rituximab for my Systemic sclerosis and Sjogren’s. I don’t know if any of the other anti rheumatic drugs I’ve taken over the years directly affected my thyroid absorption but feel they may have indirectly. I did note that when my old GP kept lowering my dose, guided mostly by my TSH, my hands would swell up and I would feel like I had turned into a tin man/ woman.
When I was taken off all my rheumatic meds and steroids, between diagnoses, I felt terrible and finally saw a distinguished old endocrinologist privately having researched it all on the thyroid community here. He put me on Lyrothyronin which was brilliant until he also reduced my Levothyroxine dose. At this stage I felt awful and all my RA-type symptoms returned with a vengeance. Untreated, I was reviewed by a new rheumatology team and had a high ANA first time with a rare pattern associated with Systemic Sclerosis.
Now, many years on I’m still on Levothyroxine, D3 and B12 and my GPs agree that I can alternate my dose of Levothyroxine between 150 and 125mcg every other day. This seems to work pretty well and my bloods are all in range.
I no longer use the Thyroid group apart from for occasional questions to confirm my interpretation of my Thyroid bloodwork. I have learnt enough to manage my own autoimmune diseases with the help of my lovely rheumatologist. I come and go from this group because it’s where I started and the drugs we take are similar and my main community is quiet. I am a less frequent visitor to the Thyroid group than here because I can’t cope with all the science or maths - especially the latter because I’m dyscalculaic. A lot of the replies and posts confuse me and, despite many with Sjogren’s and Systemic Sclerosis also being hypothyroid - no one on thyroid group seemed to have much, if any, knowledge of my other conditions or medications so my posts are taken out of context and I’m deluged with what may or may not be pseudo science.
My opinion is that if you feel one or more of your RA medications are interfering with your ability to absorb Levothyroxine, you’re probably right. In my case when I came off them all I slowly became very unwell but finally tried others until I got the right ones for me. With RA you have many more treatment options than I do but I know that the drugs I was previously given were definitely worse than the disease I was taking them for. Now I find that the drugs I’m on are working preventatively, which is extra important with systemic sclerosis since it has the poorest outlook of any rheumatic disease.
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