RA and thyroid issues: Hello - I went to the Dr today... - NRAS

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RA and thyroid issues

rheumatoidymummy profile image

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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rheumatoidymummy
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67 Replies
Simba1992 profile image
Simba1992

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to Simba1992

Thanks

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to

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

in reply to rheumatoidymummy

Yup.

rheumatoidymummy profile image
rheumatoidymummy in reply to

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

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. 😅

rheumatoidymummy profile image
rheumatoidymummy in reply to

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!

Angels54 profile image
Angels54 in reply to rheumatoidymummy

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

Neverending63 profile image
Neverending63

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to Neverending63

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

Juliehh73 profile image
Juliehh73

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to Juliehh73

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

Yogi-bear123 profile image
Yogi-bear123

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....

rheumatoidymummy profile image
rheumatoidymummy in reply to Yogi-bear123

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...

Juliehh73 profile image
Juliehh73 in reply to rheumatoidymummy

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!!

Juliehh73 profile image
Juliehh73 in reply to Juliehh73

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

rheumatoidymummy profile image
rheumatoidymummy in reply to Juliehh73

They are scary, not enjoying them at all.

Newshoe profile image
Newshoe

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.

Rexter profile image
Rexter in reply to Newshoe

Keep that sense of humor!

LadyJan profile image
LadyJan

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

rheumatoidymummy profile image
rheumatoidymummy

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...

Simba1992 profile image
Simba1992 in reply to rheumatoidymummy

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.

DelicateInput profile image
DelicateInput in reply to Simba1992

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.

Simba1992 profile image
Simba1992 in reply to DelicateInput

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

DelicateInput profile image
DelicateInput in reply to Simba1992

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.

Simba1992 profile image
Simba1992 in reply to DelicateInput

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.

DelicateInput profile image
DelicateInput in reply to Simba1992

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to DelicateInput

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...

DelicateInput profile image
DelicateInput in reply to rheumatoidymummy

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to DelicateInput

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

DelicateInput profile image
DelicateInput in reply to rheumatoidymummy

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

Zip1 profile image
Zip1

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!

rheumatoidymummy profile image
rheumatoidymummy in reply to Zip1

Gosh - a thyroid storm sounds quite dramatic!!

Zip1 profile image
Zip1 in reply to rheumatoidymummy

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

MandiS profile image
MandiS

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

rheumatoidymummy profile image
rheumatoidymummy in reply to MandiS

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

Beviejon1 profile image
Beviejon1

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to Beviejon1

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!!!

NeonkittyUK profile image
NeonkittyUK in reply to Beviejon1

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

Beviej profile image
Beviej in reply to NeonkittyUK

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.

BonnieT profile image
BonnieT

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.

:(

rheumatoidymummy profile image
rheumatoidymummy in reply to BonnieT

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

BonnieT profile image
BonnieT in reply to rheumatoidymummy

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

Vonnie10 profile image
Vonnie10

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to Vonnie10

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

Amy_Lee profile image
Amy_Lee

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

rheumatoidymummy profile image
rheumatoidymummy in reply to Amy_Lee

Good luck for your next appointment.

Scrappie54 profile image
Scrappie54

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to Scrappie54

Thank you Scrappie!

Scrappie54 profile image
Scrappie54 in reply to rheumatoidymummy

Your Welcome

medway-lady profile image
medway-lady

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to medway-lady

Will do.

medway-lady profile image
medway-lady in reply to rheumatoidymummy

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.

rheumatoidymummy profile image
rheumatoidymummy in reply to medway-lady

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

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....

Rexter profile image
Rexter in reply to

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.

in reply to Rexter

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.....

rheumatoidymummy profile image
rheumatoidymummy

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

keeta profile image
keeta

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

Vonnie10 profile image
Vonnie10

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

rheumatoidymummy profile image
rheumatoidymummy

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.

NeonkittyUK profile image
NeonkittyUK

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

Angels54 profile image
Angels54

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

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😊

Anita07 profile image
Anita07

I have had under active thyroid for nearly 10yrs and diagnosed with RA 3 years ago - tiredness and feeling low seems to be part and parcel of both - but keep taking the prescribed medications and positive thinking and continue with normality as much as is possible 👍🏽

Maria2008 profile image
Maria2008

I was diagnosed with hypothiroidism in 2002 after a root canal and in 2003 I was diagnosed with RA after yet another root canal. So, there is a link with everything yes. I am still recovering from jaw bone surgery after root canals removed, my Ra had gone and came back again. I just have to hang on there until my next dental review. In the meanwhile just organic foods and a lot of detox from mercury fillings as they were removed as well.

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