More confused after rhuematology appointment

L1985

Hi everyone

After my rheumatology appointment yesterday I have been left more confused then before its becoming very frustrating.

At my last two appointment two different doctors said I had the start of RA but the bloods were negative.

At yesterdays appointment another different doctor said it was inflammatry arthritis but wasnt 100% was RA. My recent scan showed no swelling which is great but Im still in ALOT of pain. Is this possible? Has anyone else had no swelling but still alot of pain?

She said that my thyroid problem was not related but there was something in my blood which made my immune system more lively then a 'normal' persons blood. Then she went off to get a speacalist in both thyroid and arthritis condtions who totally contradicated what was said saying the thyroid was argovating it and that the thyroid medication causes joint pain. Even though I said 3 times that the joint pain started BEFORE I took thyroid medication and when I recently stoped the thryoid medication I STILL had the joint pain.

They have put me on some strong oral steroids which im assuming they wouldnt do if they thought it was nothing. They then want to see how the joint pain is after the operation even though both said having the thyroid removed wont help the joint pain, so therefore why would it be better? Then after that they will discuss treatment.

Im so sorry for this long ramble but im really confused about things and about what is actually wrong as there difinatly is something. Im 26 and feel sometimes like im 96. They have refered me to a phsio to help with me dropping things so I guess I did make some progress but I just feel like im left im limbo still not understanding whats wrong.

Thanks for listening

Lulu xxx

theresa4

Hi Lulu
sorry youve had such a rotten appointment.
I have had an underactive thyroid for 22 years traeted with both levothyroxine and liothrynine.
My joint pain started in 2006 so it most certainly is not the meds causing my joint pain which is also sero negative RA. My bllods show up raised esr and slightly raised CRP when my joint pain is at its worst and it goes very low when I have a steroid. My bloods never show much for my thryroid either although if it dropped it caused more clinical signs than bloodwork signs. My GP feels my blood results need more attention as I dont give away many clues Im an enigma
I get severe joint pain with heat and swelling but no signs so far of damage except slight on wrist. Yet I cant walk sometimes, struggle to dress myself etc,. Im made to feel like a fake yet I know there is something wrong.
Dont let them feel like its you or the thyroid meds keep on at them

Wish you well
Theresa xx (sorry battery about to die on me so have to sign off)

wannabewriter

Hiya,
I am convinced there is a link between arthritis and thyroid stuff. I’ve been diagnosed as hypothyroid for about five years now, but they only diagnosed me after I put on a whopping amount of weight despite healthy eating and exercise. I’m on thyroxine now, and am dropping weight slowly, but it’s not coming off as fast as it should. In conjunction with this, I have OA in the knees and fibro. My rheumy has referred me to an endocrinologist because he also thinks there is a link between joint and muscle pains and the thyroid, despite being on the thyroid medication. There have been studies showing a distinct link between fibro and thyroid, but I don’t know about arthritis and thyroid.

My endo appointment is on the 8th, so we shall see what he says then. There’s talk that it could actually be Cushing’s disease but I’m crossing everything that it’s not. Either way, hopefully they’;ll get to the bottom of it and stop/halt further damage with the joint pain and fibro....

I also wonder if the autoimmune thing plays a part, ie if you have one then you will most likely get another. I have terrible skin reactions to things, food allergies (where I need an epipen because of the severity), food sensitivities (sugar itches!), gnat bites takes months to go away, vitiligo (though luckily I’m fair skinned so it only shows in the height of summer when I’m a bit tanned), autoimmune thyroid, and I think fibro can be an autoimmune reaction. Oh dearie me, look at that list. It’s a bit depressing all written down – I’m only 24! It sort of just piles one after the other over time, and you kind of get used to each bit and adapt and roll along without really noticing that your body is slowly but surely failing you!

Oh well. Fingers crossed for the endo, eh! Hope you get your stuff sorted out soon too. Thyroids are funny creatures.

xx

wannabewriter

PS Theresa - did the liothrynine work for you? I'm trying to persuade them to try it for me but cost is apparently an issue...

L1985

Thanks for the replies

I was told there is a link between underactive thyroid and arthritis yesterday but i have graves disease so im overactive....although soon to be underactive when they have removed it! fingers crossed it wont be long now.

theresa - im sorry to hear about how you are suffering but its helpful to hear that there is someone else out there with similar things wrong yet blood dont reflect it. it really angers me when they blame it on something when its happened before or a long time after taking medication.

wannabewriter - im also sorry to hear about how your suffering too. good look with your next appointment. i too get the white patches of skin vitiligo ...sorry if not spelt right. unfortunatly my family seem to be plagued with autoimmune disease. i have graves/arthritis, mum has underactive thyroid, brother has crohns, dad has colitis. i worry about my children and hope they dont take after me health wise.

jilly

Hi I had to answer your posts . I am the same inflamatory arthritis , thyroid , fibro and sjorgens sydrome all to do with the immume system . They have put me on hydro but it isnt working . I also have OA and have had a couple of joint replayments .
The trouble with the doctors they all think different and think they are the one that is right , we have to suffer what treatment suits them. I am sick of being told different things depending on who i see.
They seem to forget we are suffering while they control our lives .
I hope you manage to sort it out and get the right treatment .. jillyx

frogmorton

Hi Lulu

they still don't give me a 'proper' label :sad: ....

sero-neg/inflammatory arthritis/palindromic arthritis/RA

what l do know is that all of these, RA included are inflammatory arthritises....(evidenced in the new A/C magazine

So you are ok they DO believe you.

Love

Toni xx

nanasue

Hi Lulu,
Sorry to hear you're having such a rotten time at the moment. I can only tell you what happened to me. For several years I had a large lump on my thyroid and it caused all sorts of symptoms,. I had the symptoms of under and over active at the same time which was confusing for them but they wouldn't do anything until it started to get bigger all of a sudden, they thought it could be a tumour which could be cancerous, but it turned out to be a multi nodular cyst, so they removed just over three quarters of my thyroid ( I have enough left not to need meds), which obviously made a difference to me, but in the last few months before my op I was diagnose with RA, so I think there is a connection, I think it might have been the thyroid cyst which kick started the RA, I've now got OA and fibro as well. So there could be a connection, even if they say not it seems a bit of a coincidence as both affect our immune system. Hope you can get things sorted, keep strong and let us know how you get on,

Sue x

L1985

Thanks for all the replies.

It worries me when they cant 'label' it as it not in my head and I am in alot of pain. Hoping once thyroid is 'normal' they cant blame it on that or the meds we will see ...

Starburst

Hi Lulu,

It can be so confusing when you don't have a definitive diagnosis. I was told I had inflammatory arthritis and asked if it was RA and they said no, then they decided it was sero-negative RA over a year later. I was convinced I was the one who had a vague diagnosis but actually, after reading on here, I've found it is quite common.

Regarding lack of swelling and no pain, all I can say is YES YES YES! My inflammation is under control (bloods look better etc) but it hurts. It was explained to me by the lovely people on the helpline that even when swelling goes away, it takes the synovium some time to recover. Hope I've explained that correctly!

I'm afraid I don't know much about thryroid problems but I hope the advice given to you by others is helpful. I do know that a lot of immune disorders are related hence why people often have both.

I'm 23 and often feel 93, so you're definitley not alone. I hope you find the forum helpful for support and information. We're all here for you.

Sophie x

Ankyspond

Hi,

Just wanted to tell you where it started for me and how frusterated I was. At 39 (I am now 43) I was In pain, fatigued and little swelling they did blood tests and said the RA factor was not showing in the bloods although they seen a problem with my sacro and thought it could be Ankylosing spondilitis but put it down to sero negative arthritis. Anyway after two years of trial and error medication and keeping diaries and pain maps and further x rays I was eventually diagnosed with AS but I still have possible RA but they can't say for sure. Although I am now on anti TNF and methotrexate and much more, still in lots of pain but have my official diagnosis I know how frustrating it is to be in your situation.

I really hope you can get it sorted and they can ease your pain. Xx