LUPUS UK

Diagnosed sjogrens, hypothyroidism, query lupus..

Hi, I am getting confused over diagnosis. I hope some one on this site can improve my knowledge?

I have been hypothyroid, over 25 yrs. Never tested more than tsh as far as I know. I have taken thyroxine, (perhaps dose altered 3 times). Then, 2.5 yrs ago I became very unwell. Long story short, I got 3 dose changes over a few months. Settled, now back to dose changes again...

As I continued to sort out my ill health, I was seen by rheumatologist and diagnosed sjogrens syndrome too (though, apparently, RO in blood tests, was positive, for yrs, I had never been told).

Still searching for root cause why did I become ill 2.5 yrs ago, and, seeking, better health.

I have now found out, I have thyroid antibodies too. I have also been told ANA is positive....

How is lupus diagnosed definitely? I seem to have so many symptoms that match lupus rather than sjogrens.

Does positive ANA equate to lupus diagnosis?

I wish everyone well.

Autoimmune disease is really challenging isn't it?

I can relate to so many people here, the flare-up days are no picnic in the park.

16 Replies
oldestnewest

Hi Webar. As you know I'm longstanding Hypothyroid and Sjögren's. I'm not quite sure which symptoms you think may indicate Lupus rather than Sjögren's but they are very overlapping symptomatically? Mine was misdiagnosed as RA for five years and my first rheumy and neuro suspected I also had MS. In the end I had Sjögren's and it can mimic both and Lupus too.

Most people with Sjögren's also have a positive ANA as I do. But the Ro and La antibodies (which I don't have) are most specific to Sjögren's. The Lupus specific antibodies are different ones - dsDNA I believe.

So your Sjögren's is classed as seropositive whereas mine is seronegative -but we both clearly fulfil the diagnostic criteria for Sjögren's. This doesn't mean you can't also have Lupus, RA, Scleroderma or Vasculitis though but your antibodies strongly suggest that you do have Sjögren's as your primary rheumatic disease. Sjögren's is a disease which often affects our entire system including our skin, nerves, joints, stomach and other organs. So it's not surprising that we both feel very at home here on Lupus UK HU.

6 likes
Reply

I agree with Twitchy. This forum is a good place to be. It often takes a long time for any definitive diagnosis, and many of us here have different mixtures and overlaps of auto immune difficulties.

6 likes
Reply

I am one of those many people. My blood tests were seronegative but the photographic evidence I had been keeping was really useful to the rheumatologist, alongside medical records of numerous, unpleasant symptoms.

My current diagnosis being possibly Lupus or MCTD or even Vasculitis. Just awaiting results of skin biopsy from dermatologist, then back to rheumatologist for some insight into what is actually going on with my body. Urgh! Def no picnic that's for sure! x

Thank goodness for HU and all the people that contribute. Certainly helped me so far. 👍🏻

2 likes
Reply

Thank you, so much, Twitchytoes,

That was such a clear and succinct explanation. It makes so much sense to me now. Now, why can't consultants put it like that? All I got is, sjogrens query lupus...

I probably relate more on the lupus site because, maybe, awareness is better for lupus? Members are so knowledgeable, expert patients, their opinions help me a lot because medics just gave me an Arthritis booklet about sjogrens, it doesn't really cover organ involvement. As I have 2 lesions on liver, discomfort, also sometimes, deep chest/back pain if sinus, ear, chest infection, face/body rashes ....was thinking ah, perhaps, more lupus...

As I am quite new to overlapping autoimmune disease, therefore, new to meeting other people, face to face, with sjogrens, I have yet to hear anyone say they too have such symptoms. But, it is very early days, for me, I'm still learning.

Thank you, so much for your reply. It really has made a lot of sense to me.

I dislike saying too much about what I suffer, during BSSA meetings, as I try to remain as upbeat as I can. I don't want to be that new lady that says she has this/that symptom. I don't know why I am like that! I took a leap of Faith once and brought up the topic of smell triggers/symptoms. I was really surprised to find, once I spoke about how smells affect me, many people said, them too!

4 likes
Reply

How high was your positive ANA? That makes a bit of a difference. Mine is elevated, but it's not to the point that screams Lupus. Thyroid is much easier to diagnosis, so they will put your positive ANA to that first, unless it's very high.

1 like
Reply

I think once it's at about 1:320 or over, then they go by the pattern and the ENA to distinguish between Lupus and Sjögren's. Webar has said that she has a positive Ro which is strongly suggestive of Sjögren's, regardless of how raised her ANA is. If she had a positive dsDNA as well as anti-RO then this might indicate Lupus and Sjögren's, but she has not mentioned this. Sjögren's and Hashimoto's hypothyroidism go almost hand in glove if you have primary Sjögren's because the antibodies attack the thyroid gland.

4 likes
Reply

Hi Shaysuekirk

Thanks for info. I am due to see London consultant in August, so will find out then.

Currently, I just have a copy of letter he sent to GP, which amongst other things, says ANA positive.

This amazing consultant, (for Sjogrens dental), actually listened to me, and acted, when I said I believed my thyroid underpinning a lot of my health decline. He kindly, ordered extra tests.

For the first time in 25 yr plus, I found out, (he found out!), that I have thyroid antibodies, and thyroid has shrivelled to a fibrous mass. He was 2nd person, (other person, dermatologist, treating dreadful skin break outs), to identify, that I have been overprescribed levothyroxine, for too long.

Though I have not been back to London follow up appointment, I decided to continue helping myself.

I have now had an appointment with a specialist in thyroid/nutrition (functional medicine), private practice. I feel that I will continue to improve my health, knowing, that I am better informed and supported, as an equal partner in my care.

HU members helped, and help me, to get a truer understanding, of why I became so unwell. And, also, give me the impetus to be assertive. My aim is to be as well as possible, through less synthetic meds, and, better nutrition.

Best wishes. 😇

Reply

Hey, Twitchytoes, you are so informative.

I did get told by rheumatologist, first visit, that I have a 'speckled pattern'! Mind you, I have no idea what that means either!

And, yes, others, HU, have told me I was hashimotos...

Even, to date, my GP doesn't tell me anything! Probably my own fault. Never asked once she gave me piece of paper, slid across desk (25+ yr ago), had myxodeama written on it. She told me I need take a tablet everyday, forever, or I would die. I took the tablet. To be fair, I did fine, until, 2.5 year ago, when I became v unwell.

Now, I ask questions. I asked her, knowing the answer from this site, did my results mean antibodies to thyroid, she said yes. I doubt she would have ever told me. At that time, I wanted to start a new topic.

WHAT IS THE BIG SECRET ABOUT THYROID HEALTH AND TREATMENT?

Then, I realised. Thyroid awareness isn't top of the health agenda. Just as nutrition isn't.... I guess our disease is not quite in fashion, just yet.. plus, there is obviously a thyroid scandal, I was unaware of...

I have on my to do list, next week, buy that book, Stop The Thyroid Madness!!

😇

Reply

Hi Webar. I'm about to flake out just now with total wipe out after a busy day.

But to answer your question re thyroid disease from a non medical perspective - for me the thyroid thing is quite simple. My thyroid no longer exists or functions apparently - after 15 or so years on Levo. No GP told me that mine was autoimmune but apparently most Hypothyroidism is and many have it and don't have anything else wrong. I do wonder if a lot of those diagnosed with ME and Fibro actually have thyroid disease and I also worry that GPs aren't very astute about Hashimoto's and don't always grasp that symptoms and bloods don't always correspond to an average as they expect them to - so they need to learn to trust their Hashis patients to explain how they are feeling and be guided by this much more.

However I trusted my NHS endo and he explained that it's quite simple really. If feel I'm under medicated or over medicated then I probably am. But he also explained that my Sjögren's is the main issue not my defunct thyroid.

So my feeling is that my longstanding Sjögren's triggered my thyroid disease when my antibodies started attacking it. So for me the Hashimoto's is just another aspect of Sjögren's rather than two separate diseases and I focus on rheumatology over Hashis because for me it's key. The Hashis is controlled if I take the correct amount of Levo so it's relatively straightforward and I avoid the politics and conspiracy theories about NDT and T3 now like the plague as I'm not medically trained and can only be led by my instincts. Yes it's important what we eat and yes we should learn as much as we can about our diseases but Hashimoto's is also extremely common compared to Sjögren's and I think there are just too many theories about it from non medically trained people. These theories muddle me and really don't help.

Also I admit that my thyroid disease bores me because it's just about balance of numbers and I'm not very numerical and just feel life is too short to get caught up in conspiracy theories and health politics relating to one tiny defunct organ that my antibodies have apparently destroyed and I now have to rely on Levothyroxine. I've learned this the hard way when T3 made me ill and scarily overmedicated. This T3 stuff I tried prior to my Sjögren's diagnosis after being told I needed it by well meaning people who aren't actually medically qualified to advise.

As you know I'm now on a powerful immunesuppressant so I choose to avoid the functional brigade unless they can work alongside my rheum and others - which most can not. But I do admire your determination to see all points of view. I've tried to as well but I'm a bear of little brain re the workings of human body and its chemistry.

So I just hope it doesn't end up addling you as it did me! Best of luck. X

2 likes
Reply

Oh, gosh, Twitchytoes,

That was an interesting read.

I do understand what you are saying. As you say, I still try and help myself listening to many points of view. I also balance that with gut instinct. I guess trial and error is part and parcel of doing ones best.

Like you, I am wary of T3. I've not been offered, or advised, by GP, nor functional medicine Dr, to take T3. That does make decisions a lot easier for me, as I think I would be concerned. Like you, I also, would prefer that all health providers, along with myself, work together as a team.

Interestingly, I have had a couple of weeks whereby, I could have been forgiven for believing sjogrens in remission..... last night, another story! Hardly any sleep, numerous symptoms, today, my eyes, mouth and nose are burning, sore, throat too... the glands in my neck are up (hamster like)... I guess its a case of here we go again! Lol.

Have a lovely day Twitchytoes. It looks like another hot day ahead here. I really believe that weather has a huge impact on my health. This heat, so welcome to so many, really does not help me, then when it goes too cold, the sinus infections start up... oh, joy! 😇

1 like
Reply

Oh dear Webar. I think, if I were you, I'd focus on learning all I can about Sjögren's because yours sounds pretty classic to me.

Sometimes too many points of view can overwhelm and exhaust us. I avoid going on the Thyroid UK HU for this reason. No one judges me for taking a powerful immunesuppressant here, no one asks me to list my blood results or tells me doctors know nothing and all here know that our diseases can be pretty overwhelming.

Hypothyroidism, on the other hand, is very common and the vast majority of people who have it just take the thyroid hormone replacement, get on with their busy lives and never give it another thought. It doesn't cause your sinuses and eyes and mouth and lymph nodes, joints, peripheral nervous system and sometimes blood and organs to become inflamed.

Please take care and rest up. Xx

1 like
Reply

Ps I've got to thank you for making me aware that I haven't had my thyroid bloods done since October and think that I may well be undermedicated just now. I'm on 125mcg but the fatigue, stiffness, ache, IBS-c etc are all flaring madly and I've assumed it was the Mycophenolate dose increase or just Sjögren's fatigue.

Now I realise I've been here before when my Levo has been reduced and I'm thinking I'm going to have to request an increase to 150mcg to see if this improves. I can feel a battle coming if, like my old GPs, she is obstructive and says my thyroid bloods are fine and all is Sjögren's. Hoping madly that she accepts I'm the expert for myself on this matter though as Hashis fatigue is very particular and easy to remedy if only we're trusted to recognise it ourselves! X

2 likes
Reply

Re; weather, I have exactly the same issues as you! Have you found anything that helps prevent / treat sinus problems? Mine are recurrent, wondering if the flu or pneumonia jab would help which I've been offered but declined as heard they can cause issues themselves with autoimmune conditions.

Reply

Hi LH44

Sinus problems were very new to me. Unfortunately, nothing I did self care helped.

Four times, I suffered, between October 2016 to February 2017. Each time, I had to see GP, because infection went to ears, throat, and chest. So, the only relief I had, was from taking 4 lots of antibiotics, back to back.

I started taking hydroxychloriquine, October 2016, I stopped taking it, after the last prescription for antibiotics, February 2017. I reasoned if my immune system was being suppressed, just at the time I could do with immune defence, I be better without it.

I've not taken hydroxychloriquine since February 2017. I now wait (slightly anxious), pray, and hope, that the sinusitis does not return, as I feel, its that time of year again. Lol.

Though, to be honest, although I ate a good diet before, I am now, mostly gluten free. I eat even more fruit, and vegetables, and I take vit C. I truly hope, that making such changes, will have improved my defence. Time will tell.

I also wrap up, as my Mom tried to teach me, lol, I actually, always wear socks, even a hat and scarf, when the weather gets cold.

I go to a walking group twice a week. 4 mile walk, whereby, I cover my nose and mouth with a scarf, as I don't want the damp air starting sinusitis off. Friends did laugh, I tell them, hey, a girl's gotta do, what she gotta do. Bonus is, I'm not close to picking up their coughs, and sneezes.

Flu jabs, pneumonia jabs, are a very personal choice. Personally, I do not have them. I may be foolhardy. However, making my own choices, helps me take responsibility for my well-being. Doing so, is good for mental health as well.

I hope we are lucky, that we do not have a miserable winter, battling sinusitis. Take good care of yourself.

Listening to my body is paramount in my keeping well.

I will just add, many people, do really well, taking hydroxychloriquine. It did help my joint pain. If I suffered such pain again, I would probably take hydroxychloriquine anew. After all, it may have been a coincidence that for the first time, in my life, I suffered recurring sinusitis.

1 like
Reply

Thank you, Twitchytoes,

Yes, through your kind sharing 're sjogrens journey, it does sound classic.

Yes, again, I have been, still am, to some degree, overwhelmed. I think had there been more awareness about sjogrens, my GP would have been more informative. Then, I would have taken her advice and probably followed a sound treatment plan.

GP prescribed levothyroxine for 25 yrs. I got on with living my life, wife, mother of 3, working, friend, family, etc...

Sadly, when I became very unwell, same GP didn't really help, nay, hindered my getting well... thank the Lord for surrounding us with others who can see, hear, and know when ill health needs addressing, investigating further.. my GP is a lovely person. I must assume it is guidelines and cutbacks that stopped her investigating...

When I collapsed, I found myself, being referred to dermatologist, chemical testing, neurological department, gastrointestinal department, rheumatologist....... with each diagnosis, I did become very overwhelmed. To this day, I have not had any support from GP for Sjogrens.

Still, all that, in the past now... I recognise symptoms. I listen and I learn. From one of your replies, I decided to put query lupus diagnosis out of my mind. What they did not confirm, I'm not gonna think about. Though, that doesn't mean I will stop using lupus site. The support is fantastic here!

All in all, I'm much better than I was. Yes, even today, eye drops in, skin bathed in lotions dermatologist prescribed, cocodamol 8/500 taken..... no worries... and so many lovely people who help.

Good luck with thyroid test. I could see how you were making the connections there. Nothing lost for testing, if no dose change, best to get it checked, rule/in/rule/ out....

Take care, thank you. 😇

1 like
Reply

Hi Ive got to agree with Twitchy. I was misdiagnosed with RA for 12 years as the main culprit. ANA not tested. It was my suggestion. Now ANA and ds dna positive and symptoms showing Lupus. Then further symptoms leading to Sjorgrens as well then bloods showed Ro and La antibodies. Whether that's the main or not who knows. The thyroid was not altermaticaly checked for years until the fatigue seemed to change. My heart problems got worse, dry mouth got worse etc. Interestingly as I posted recently my son has recently been diagnosed with hyperthyroidism (Graves disease) just had a DVT and is now having genetic screening. Ill have some of his please.

3 likes
Reply

You may also like...