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RA and thyroid issues

Hello - I went to the Dr today as I’m really not feeling myself and she’s testing my thyroid function. Does anyone else have RA and a thyroid issue? Are they linked?

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You have a good doctor! Thyroid issues are in fact quite common in RA but too seldom diagnosed. By treating underlying thyroid issues you can decrease your RA symptoms. Thyroid symptoms can in fact be diagnosed wrongly as RA.

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Thanks

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Funny you should mention it! I have had Graves disease in the past. I've just made an appointment to see doc as I fear it may have flared up again. I feel awful and am just pouring with sweat. Exhausted and have palpitations.

Could be something else I suppose, but feels the same.

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That’s what took me there, palpitations... they’re both autoimmune conditions aren’t they?

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Yup.

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Honestly, I could do without something else I have to deal with!!

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Hello, I got under active thyroid about 10 years ago, then 3 years ago was diagnosed with RA, they say when you get one auto immune problem you are likely to get another, I seem to be sursept able to these, let's just pray we don't get any more. I take tyroxine tablets every day 75 mgs, plus 1000mg salafasazine, will soon be rattling. Hope you get sorted very quickly. 😅

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So I’ve had RA for 10 years now and over the last few weeks I’ve felt dreadful, exhausted, anxious, muscle spasms in my neck and shoulders - just really not myself!

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I have just recently experienced these terrible pains in shoulder and arms ,can't get clothes on , couldn't lift arm ,terrible !

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I was diagnosed with RA and hypothyroidism within a few weeks of each other nearly four years ago now. It seems I just get one under control and the other goes out of sync. I also have osteoarthritis and PMR. So it is a constant uphill battle.

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I’ve wondered for a while if having RA might lead to somethings my else eventually!!

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I have had an underactive thyroid for over ten years and just waiting for rheumy appointment after GP bloods strongly were strongly suggestive of RA. I have family members who have quite a collection of AI diseases.

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My granny has taken thyroxine for as long as I can remember so maybe there’s a family tendency for me there too...

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20 years ago diagnosed hypothyroid and probably started having inflammatory arthritis symptoms not long after. Thyroxine 125 mg seems to help but yes also an autoimmune condition....

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To be honest I was worried about heart disease because of the palpitations - I think I’d be relieved if it turns out to be my thyroid...

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Before I got my thyroid diagnosis I was back and forth to the docs with a number of problems , odoema, very dry skin and heart palpitations amongst a few, they all disappeared once the thyroxine started to work. Unfornutaly AI diseases can cause lots of non specific problems making diagnosis hard to pin down ....... as we all know!!

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And of course they more you think about heart palpitation, the more aware you become of them, so try your best to ignore them (hard, I know) xxx

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They are scary, not enjoying them at all.

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I have had underactive thyroid for 17 years. I am on 100mg levathyroxin. I was diagnose with seronegative ra 2 years ago. So I would say yes. I am on 25mg mtx and hydroxychloroquine. I rattle lol.

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Keep that sense of humor!

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Yes I have both. I was told 12years ago would surely get thyroid problems as having polymyalgia which is an autoimmune and thyroid would follow as it surely did 3years ago. No problems from that with medication but zero arthritis is a thorn in my side and very debilitating... follows on from pmr.

Ladyjan

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Interesting - from looking at the replies it seems a lot of you have the thyroid before the arthritis, it would be the other way around for me...

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Actually thyroid problems go undetected for many years before they give really bothering symptoms. I did not know that my thyroid had in fact been underactive since my teens. Looking back with the knowledge I have today I can identify the thyroid problem in always feeling cold, low body temp, PMS, miscarriages and so on. There are in fact many symptoms that help us to identify a thyroid imbalance.

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Do you know what your thryroid readings were before you started thyroid treatment?

Mine were classed as borderline in 2002 - 6.7 TSH and the T4 eventually 11. 11 for T4 is now within the normal range but I don't think it was then. I was never offered any treatment. The TSH dropped to 5.4 a couple of years ago and amazingly dropped to 3.8 this summer - well within the normal range. It was outside the normal range for 16 years. I'm putting the good result down to my Chinese tablets which unfortunately I can no longer get. One of the effects is promoted as improving the thyroid.

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You really need a good specialist to read and diagnose thyroid problems. There is a really good thyroid group on HU. They are very good at interpeting tests. You should have a look! A TSH of over 5 is way too high. The recommended now is aound 1. You can support your thyroid with a diet than can normalize the situation without meds, T3 supplement is often what is needed. Do take a look at thve Thyroid forum. They have answers to most of your questions, I am sure. Good luck. Simba

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Thanks. It was over 5 for 17 years but has just this month dropped to 3.8. In fact, for many years it was 6.7. The 3.8 is classed as normal according to the test result. I notice though that 17 years ago, the T4 had to be a minimum of 12 to be normal and now it is a minimum of 9. I put this down to the NHS trying to save money and rationing as they don't offer treatment until it is very bad.

The only real symptom I could describe is a slight weight problem. My weight used to be well under 8 stone but gradually increased to over 10 stone. It was always fluctuating by at least a stone or more - It would roll it on but it rolled off very quickly. I can diet and still lose it but I never had to diet previously. I do a lot of exercise so I know some of it is muscle gain.

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What about your body temp? You probably need to go private to get knowledgeable thyroid help. It's really no point waiting until its bad since the imbalance is a continuous stress for your body and health.

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Well, for the first time in 17 years I have had a result which my GP considers "normal", ie the TSH has dropped to about 3.8. I think this could have been the result of Chinese tablets I took - I can't get any more till next March when we come out of the EU.

I've had to go private for just about everything I have had wrong with me and to be honest it is just getting too expensive. I am not a fan of Western medicine anyway.

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I’ve only been tested once before in November 2016 and the result then for TSH was 0.76 mlU/L - no treatment as yet just a check to see if anything is going on so it will be interesting to see what the level of TSH is in the blood test I had today...

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I think various hospitals and doctors' surgeries use different criteria. When mine initially came up as abnormal in about 2002 (TSH over 6.00) and the hospital recommended treatment, the GP surgery refused and said they do not go by the TSH as it is unimportant and they always measure the T4 which is the thyroxine blood level. The T4 then was between 18 and 24 (v. good) eventually dropping to the then borderline of 12. The GP promised to give me the medication but said he wanted to do more tests to get the level right. Well, he did about a dozen until he eventually got one that was arguably normal, ie on the border and he then refused, saying my results were normal.

The tests were repeated every six months or one year but I have never had a normal TSH but the T4 was normal and decreasing and is now 11. The new normal is 9 whereas it used to be 12.

I took Chinese herbal tablets for RA for 18 months but they are promoted for the thyroid function. I have no real proof but it seems to me that they have caused my TSH to fall and for the first time it is showing as normal in my GP's criteria, albeit to some hospitals and GPs that would be deemed as abnormal. However, it is a big improvement after 16/17 years.

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Blimey - that sounds like a journey and a half!!

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Yes, a lot depends on your GP, their budget and where you live.

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Hi, not sure whether they are linked but I had a thyroid storm in 2014 and was diagnosed with RA soon after, all seems a bit too much of a coincidense! It takes a while to sort out which is causing which problems but if my thyroid meds are at the wrong level I suffer with horrible sweats and palpitations. I don’t know which actually came first RA or Thyroid!

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Gosh - a thyroid storm sounds quite dramatic!!

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A bit frightening at the time but great hospital and gp and all sorted now! I hope you get sorted soon.

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Hi I was diagnosed with thyroid 17 years ago about 5 years ago I started to experience lots of pains in hands and wrists and was told I had bilateral carpel tunnel no one even thought to test for RA then I got scleraritis again no one thought to test for RA then 2 years ago pain was intense again told its carpel tunnel even though CRP was high after completely seizing up last year I was tested for RA. Moral if you don’t feel right keep pushing don’t accept feeling awful. Oh yes and my mother had RA and dr still did not text me for it

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Thanks - I am feeling really ‘off’ at the moment, just can’t put my feet ne’er in what it is...

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I was just diagnosed with Graves,hyperthyroid,a few wks ago.I lost 10 pounds in a month,palpitations were awful,horrible sweating.Endrocrenologist out me on beta blocker for Palps and a drug to slow thyroid down.I am beginning to feel better.

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So I’ve done really well dieting (or so I thought) having lost over two stone since Christmas - I’ll be annoyed if it turns out my weight loss is nothing to do with my efforts!!!

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You will get there. It takes a little time. I was exactly the same as you describe. I went from 8 and 1/2 stones to just under 5 very quickly and I ate a lot and had Ensure drinks but they say you "feed the thyroid" and that is true. My neck had a goitre and my eyes bulging but it all reversed once I'd been on Carbimazole a few months. It will get better soon. Good luck. x

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Its been 5wks since I started on tapazole I feel so much better.I see endocrinologist tom.Had blood work this AM.Thank you for your encouragement.

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I started out as a teen with overactive thyroid. I stopped taking the medication after about four years. When I was about 40 I gained weight for no reason and tests showed I then had an under active thyroid and I’ve been on that medication since. About 30 years. I’ve only just been diagnosed with RA. I attend a pre-diabetes prevention class and almost all of us have a thyroid problem. We all wondered if there was a connection there. I think we’re all looking for answers. I do believe someday someone will find the answer. Maybe not in our lifetime.

:(

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Ugh - poor you, you really have been through the mill!

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It could be worse. At least we have this great place to commiserate with others like us. 😊

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I have both15 years with a thyroid disorder but I’m certain I had it since I had my kids , then RA 3 years ago my thyroid is never correct I have all the symptoms head sweats always cold,dry hair,dry skin, fatigue, depression, list goes on with the thyroid they don’t seem that bothered with thyroid issues people are fighting tooth and nail with the government to get thyroid issues correct., There is a very good site on here, some people treat themselves with thyroid S I’ve even tried it but when RA took over I gave up because you need testing for your T3 T4 your reverse T3 i there is more its complicated then there is a spit test to look at your adrenal glands and so on , a full iron panel list goes on bare in mind you will have to pay for all these blood and the drugs that go along side it’s hard work and complicated and also there is a really good group on Facebook stop the thyroid madness I think it’s called if you need more info let me know, the gp only treat certain bits, it’s very complicated, goodluck or you could be ok just on levothyroxine. Some people are I’m not ok but I have battle with the RA at present. I wish you luck.

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Thank you - appreciate it. Nice to know there is support if my blood tests show something up.

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Oh, dear!! I never thought thyroid and RA have any relationship in the past. I had 2/3 of my thyroid removed about 2 years before I was diagnosed with RA. However, I did my regular yearly blood test and all the years my thyroid results were good.

However, once the doctor wanted me to go for an ultrasound scan as he said that my neck looked a bit bigger than normal. I had no symptom and I was not on any medication because my yearly results were all normal. The result of the ultrasound scan proved that the doctor was right. There were 2 growth on my thyroid, they grew inward hence no one could really see the growth from outside.

Since they were not too big, my doctor suggested to put me under observation. I needed to go back for the ultrasound scan every 6 months. 1 1/2 years later, since they grew bigger, my doctor suggested to have the operation done.

Look like I need to Google the relationship between RA and thyroid to enrich my knowledge now. My next appointment will be in mid Sept, I will post the question to my rheumy to see what they have to say.

Amy

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Good luck for your next appointment.

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It is not a surprise that there are many with the same complaint. I have 6 out of the 8 autoimmune issues for most of my 64 years. It started out with RA as a child my mother did not know I had. Suffering through childhood was painful. As I age it seems more come into view with the Latest one Graves. Let your body gives you clues, write them down and keep a track of how you are feeling. This way when going to your appointment show him, this could be helpful.

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Thank you Scrappie!

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Your Welcome

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Yes and Celioc and Pernicous Aenemia. All treated well so no problem along with blood medication Riveroxaban as have had clots too. Try not to worry thyroid ( Hashimoto's) is common in the UK and easily treated just means even more blood tests so get your GP to line them up with the ones for RA thus less needles ! Having a think please talk to your GP as its very dangerous to over medicate thyroid issues which can cause palpitations and stress on the heart. Please only go by properly qualified medical advice.

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Will do.

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My thyroid packed in over 30 years ago and I take 150 mcg of Thyroxine daily, it really is no problem and Hashimoto's is auto immune in fact was the first of the list of them iI got over the following years. Thyroxine makes a huge difference to skin, hair, eyebrows, fatigue, body temperature no to mention mood. Another life enhancing medication so many of us need and I for one take for granted every day.

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Thanks for sharing - that all sounds positive which is great to hear.

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Hi all,

I too have had strange auto-immune problems on & off during my 70 years. Desperately skinny & allergic reactions (to caterpillars etc) as a child & frequent 'growing pains' which I believe were actually RA. As a teen tested for hyperthyroidism but negative. At Uni developed all symptoms of Guillome-Barr syndrome / glandular fever so severely that they sent me home (to die or recover!) although all the tests claimed I didn't actually have this. A similar thing happened on my honeymoon (stress !) where I mimicked measles but didn't have it & then went into a dangerous coma for three days & was very poorly for ages. I suffered all sorts of symptoms on & off until I suffered acute ME symptoms & was diagnosed with PVS (post-viral syndrome) & advised to give up f/t work. However, I received no benefits & really had to cure myself through research into diet and health supplements. I was told I had borderline hypothroidism when I was about 45 & eventually treated at around 50. When I received 25mcg of Levothyroxine it was amazing & I felt the diagnosis was right but since then each hike in medication hasn't seemed to make any difference to how I feel. (i'm now on 100). One worrying factor is that one partricular Dr didn't think I should be on it at all & thought something else was the cause. Many routine tests don't actually test for T4 & locally they are reluctant to ask the labs for them. This particular Dr insisted so it is a bit of a worry. I'm sure I had RA before this but no-one suggested treating it & i still manage it through diet & supplements largely & pain-killers when absolutely necessary. I was diagnosed with cardiac arhythmia twice in my life and once taken to St Barts' Hospital with suspected heart attack but they said my heart was OK & I had suppressed asthma ! However, in the last few years I have palpitations quite often especially at night and it can be quite scary. I also suffer from dry mouth and , unless I take Oil of Evening Primrose or similar, my skin gets dry & scaly, especially on my legs. I have had to up my dose of this lately too.

Sorry to go on - I never talk to friends or even family much about these issues - but it is interesting to see that many of us share a similar symptom profile. I feel a research project looming ! I wonder if others have a strange reaction to sugar or had several years of antibiotics (for ENT problems) or....

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I had glandular fever at 13 and a year later could not walk. I had been very active. I did not develop thyroid problems until my ovaries were removed at 43, suspicious for cancer. I had already had my uterus removed. Hypothyroid! At 44 all the tests and symptoms were present for lupus. Then breast cancer at 55. Now I am 70 and just had my second breast cancer partial mastectomy. Plaquenil helped but I got eye problems, so now I am on methotrexate and anti-hormone because I have 100% estrogen which causes tumors to grow. I think and have faith the surgeon got all the tumor. I have to be on this medicine for 5 years. So I do not know when I have a pain what is causing what. I remember feeling exhausted with thyroid problems. One doctor said the symptoms for hypo and hyper cause that severe fatigue so insist on the blood work or go to a good endocrinologist.

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I hope the worst turns out to be behind you at the end of this five years, Rexter. You've certainly been through the mill. It is hard for us patients to get precise & accurate information on which to base our decisions about treatment options but it is reassuring to hear and share with others on this site. I notice today that anaemia is mentioned - another common thread. I was diagnosed as 'borderline anaemic' for years (but not treated) & I take a liquid iron supplement on & off a few times a year. Come to think of it, I need it now ! (but the total exhaustion I feel is probably because I have 3 of the noisiest, (naughtiest? - I'm meant to say 'liveliest' aren't I ?!) grandchildren staying for the holidays.....

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Wow - you’ve dealt with so much!! Thank you for sharing with us. We can all learn so much from each other.

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Lichen planus .hashies .sleep apnea.R/A.

Penicious Aneamia.all autoimmune problems i have.and O/A in spine aswell.join the club.

All gentle Hugs xx

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God help thes poor people it’s just horrible reading what people go through, I wish you all well. X

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Turns out my TSH is fine - the result was 1.08mlU/L.

The only thing that showed as abnormal was my red blood cell count at 3.91 10*12/L which below the normal lower limit but the note attached says ‘not clinically significant’ so I guess they won’t do anything about it. As a teenager I had anaemia caused by low ferritin levels, that wasn’t tested for on this occasion but armed with what I know about my past I’ve started taking a liquid iron supplement as I know anaemia can cause tiredness and palpitations.

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Yes Graves here too. Was diagnosed in 2005, 10 years after RA was diagnosed. Very hard to get both under control in 2005/6 and lost 3 stones and was e trembly underweight and quite ill with the effects of a goitre but it came right and now I am on 10mgs Carbimazole daily to hold the Graves. My endo thinks my thyroid would be stable if he withdrew the Carbimazole but he is reluctant to do it in case I go the other way and I agree as I don't want to be hypothyroid. The RA is under good control now since Rituximab which I have been on for 4 years. My endo said a lot of his Graves Disease patients are also RA patients. Some people with Graves can go into total remission and not need meds but that tends to be rarer than those who respond very well and need a very small holding dose of the thyroid med I take to keep it all ticking over nicely. Good luck. x

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Hi I have underactive thyroid for years , I have had chest x Ray as on MTX ,this has been stopped due to chest infections , waiting to see chest specialist , told I could have enlarged heart, lung disease, of something to do with thyroid , I'm now have 72 steroids, I'm still having pain , been nightmare , I just think tomorrow another day , good luck xSandie

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I was diagnosed with under active thyroid 14 yrs ago and currently take 150 mg of thyroxine and then diagnosed with RA 5 yrs ago, so yes they do go hand in hand both auto immune problems, hope you get sorted out soon.

Lady B😊

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