New here - advice please. Sjorgrens and/or Lupus or...

[UrsaP]

I’m new here trying to tag @MichelleHarris A friend has highlighted your post to me as there are similarities.

But looking for general advice.

I have not been diagnosis with anything but ‘acquired hypothyroidism” back in the early 90's after a 10 year battle to get any diagnosis. Around the early 80’s when the goitres started I also started with conjunctivitis that would not clear and eventually caused ulcers in my left eye. I recall walking through town, in the rain, wearing glasses, holding onto my mothers arm, unable to see properly.I was referred to the eye hospital and after 6 months the ulcer burnt itself out. I was discharged and told to go straight to eye A& E at the first sign of reoccurrence.

Ulcers have reoccured throughout the last 40 years. Always in the left eye. This has since been labelled allergic conjunctivitis and left therpectic keratitis. according to the recent consultation letter. (Not something I was aware of)

Two and a half years ago, I went from needing basic reading glassed through 3 changing prescriptions in as many months, resulting in requiring verifocals. My eyes were very dry again and unsettled. I was referred from Eye A&E - following several visits over a few weeks, to eye clinic, somewhere I had been to severals times over the years, but not for some time at this point. This referral, was rejected and I was told to go back to eye A&E. Despite efforts I did not get an explanation. I did eventually get my eyes settled enough to get a prescription that was ok. A year later my eye test was fine, no change. Then last year, in Aug, the optician found changes to warrant new glasses. A week later, picking them up, the left side was just blurry and unusable. I had another test the following day and was told it was the right eye that had changed in the week.

I was referred again, this time to a new specialist - it seemed that the previous one had gone...(I got the impression this might have been under a cloud) In Oct I saw the specialist. He had clearly decided before I entered his room that he was going to do nothing. He sat back and said ‘opticians’. If I had two tests on the same day I would get a different reading. To the point of needing a different prescription, surely not. When I asked this he repeated the same mantra. He referred back to my file, and mentioned the previous diagnosis. I mentioned that I was not convinced as the label had been applied poss 15 years into my need for attendance. He said it was the only explanation for it being in one eye only. (the ulcers) I asked about Lupus and he dismissed it outright. Basically sat back and did nothing. He then decided he’s better look in my eyes (tick box exercise) I have had enough people looking my eyes to know that that was such a superficial examination, He barely looked in one eye, roughly pulled up the lid on the other and that was it.

The appointment was nothing but a rejection. I suspect he couldn’t refuse to see me as they had done that 2 years earlier.

I did not get any correspondence from him. Last week I called into the surgery to see if they had received a report. They gave me a copy of the letter he sent.

This letter is a disgrace. It is cut and paste throughout with different size type and font and words running into each other. It relates to my ‘previous conditions’ only and mentions nothing of this current issue of unsettled eyes. - It states dictated but not approved. I suspect this is his get out clause?

For 40 years now, I have struggled with very dry eyes - both eyes, ulcers reoccurring in the left eye. Initially this would be intermittent, but most of time now, and does worsen now with flare ups. Of what I do not know. Furthermore for many years I have been getting a very dry mouth overnight, again intermittent but with growing occurrence. I have water by my bed which I sip every time I wake. Which can be a lot. Yet I always wake up with a very very dry stripe down my tongue.

I have had blood tests done for Lupus/Sjogrens by the GP oa couple of times, but nothing shows and I can not get them to investigate further. I suspect it is a case of I have hypothyroidism, I get T3, how dare I ask for anything else.

I generally avoid the Drs but an issue has arisen that I really needed to get checked out, so I bit the bullet and went to the GP last week. (I live in fear of seeing them in case they raise the t3 issue with a view to taking it away from me.

During the consultation I did ask how I go about getting tested for Lupus. She said that is not an easy question and asked me why I was asking - I gave her the list of symptoms that I have recognised and that my friend who has the condition has seen signs that suggest lupus and is nagging me to get further testing.

I think it is more likely Sjogrens but my genetics do point to Lupus, I have more lupus genetics than my friend who has been diagnosed.

I am seeing this Dr on Thurs to discuss the possibility of Lupus, (and Sjogrens) and I wonder if there is any advice that can help me get properly tested once and for all?

[MichelleHarris]

hopkinssjogrens.org/disease...

[MichelleHarris]

Hi UrsaP the above site explains that Sjogrens can test negative (as I did) to tests that the GP or Rheum would generally do. However an ultrasound or lip biopsy or specific antibody tests that a specialist would do would be more conclusive. Mine was visible on the ultrasound. I am not an expert. I am seeing a specialist next week for the first time and will hopefully learn more. Your eye history sounds so much like mine! I’ve just gone Hypothyroid too. Have you gone Gluten free? x

[UrsaP in reply to MichelleHarris]

Hi and thanks for coming back. Yes I thought the similarities re eyes might be telling. Good luck for next week, let us know how you get on.

[MichelleHarris in reply to UrsaP]

I think you have been treated appallingly. That letter IS a disgrace. If they were suffering they’d care more. I would keep asking for an ultrasound x

[UrsaP in reply to MichelleHarris]

It agree, the letter looks worse than I described lol I'm thinking I will report it. I did ask the optician that referred me to ring to talk to me about this, but she hasn’t! She won’t be bothered about the custom, as I’m a dodgy bet with changing prescriptions! Have not felt my eyes settled enough to get them tested again since.

I’ve just been reading through the link you posted. Thank you for that. Very informative. I wonder if I I have either or both. Just have to persuade the GP to refer now.

[Deniseelk]

Can your GP not refer you to a rheumatologist who can carry out an immunology panel of blood tests? These could include ENA, ANA, anti ccp, rheumatoid factor etc? They can also carry out an accurate test for dry eye and check your joints for inflammation and any tender joints? I wonder, do you have fatigue too? Hope you can get the answers you need soon.

[UrsaP in reply to Deniseelk]

Hi. Im seeing a GP on Thursday to discuss Lupus/Sjogrens and I’m hoping to persuade her to refer me to a decent lupus specialist. I will make a note of the tests you mention and see what she will do.

I was referred to a rheumatology specialist about 18 month ago, regarding swelling/arthritic joints. She was useless, her response to my GP had to be amended twice as could not get it right. Not encouraging. I have lots os mild osteoarthritis. Blown knuckles. Hip, knees ankles shoulders, neck and just about every joint give me gip at times. Thank you for your help.

11/2 - read through the link MichelleHarris posted saw the links with joints, mentioning same as I did...maybe something in that? It is now on my list for Thurs.

[MichelleHarris in reply to UrsaP]

Change your GP if he wont listen. Its your health. We arent here that long to waste time getting treatment we need. I used to be so full of trust, but not now. You have to find the good ones. And there are. Ive just seen a really conscientious kind Endo. All that has been discovered now is because I changed my dismissive GP. I saw a different one and as soon as I walked through the door she said ‘ You’re really ill’. I said Thank you in disbelief and jubilation. She has set me on the road to recovery x

[UrsaP in reply to MichelleHarris]

Oh well done you! My GP who is becoming known as a Jekyll and Hyde character, is seconded elsewhere at the minute. He has been great at times, not at another. I saw another Dr last week, Not a great deal of confidence in that not many years ago she told me she had not heard of T3, I found that some years before 2013, she had put ‘patient feels better since starting T4. I had stopped taking T4 in 2010...was on T3 mono.

Hence I can’t change Dr, can’t consider moving as this surgery still giving me T3, if I go elsewhere just won’t get it in current climate. And I’m not going back on T4 for anyone. 20 years struggling with it and getting more and more ill was enough for me.

However this GP, because she has not got that much knowledge on T3, might work in my favour...I might be able to educate her. The training is the problem. they just don’t get trained in it.

She as very responsive last week so I’m hoping she hasn’t just gone away to read up and tell me I don’t need testing. I’m reading up too. Fingers crossed.

Growing up we had a lovely Dr who first checked my neck when goitre flared, and said he didn’t know what it was but would send me to someone who would know. Sadly the guy I saw there, who had removed nodules from my sisters thyroid not long before, pompous git he was, stereo typical flouncing about with his entourage, just did blood tests erratically for 18 months then dismissed me with a wave of his hand. My GP, when reading the report said, 'they couldn’t make their ****** minds up’. Got sent to hospital for bloods the next day, whilst swelling prominent - was erratic in appearance. Got to hospital in Leeds - no one there to take blood. Saturday! I was moving away at the time, job, so it went on the backburner and I just lived with it. Despite many tests along the way, it took another 10 years to get a diagnosis and T4...Things went downhill from there! But I’m going to push for this referral now. I’m pretty sure that there has been other problems all along, Adrenals/Sjogrens/Lupus or a combination of.

Just wondering where is best to go - Oxford or Bham, if I can.

[MichelleHarris in reply to UrsaP]

That is awful! I’m agreived about my story then I hear of others and feel pretty lucky at the minute thanks to my new GP. I buy my own NDT now. My health has massively improved. Thyroxine caused me a Sjogrens flare. Good luck with your GP 🤞

[UrsaP in reply to MichelleHarris]

My story is by no means the worst, there are many of them much worse. People have had their T3 just taken off them with no consideration for health and wellbeing. One lady was on 60pd, same as me, was told her area only allowed 10 pd, gave her it in 20mcg tabs and told her to dissolve the tablet and take up 10mil in syringe and throw the rest away!!! At £9 per tablet? Making it harder to administer, and twice as expensive? The mindlessness of it? She has had such a battle on her hands.

I’m still getting mine, feel so grateful and guilty in equal measure. Live in fear every month, of this month being the month they say no. So wrong. Yes I am grateful for getting the medication I need. But shouldn’t have to feel guilty -it should be the GP’s/Endo.s who are refusing it that should be feeling guilty.

Thyroxine slowly attacked me - over about 10 years, fatigue, fibromyalgia and migraine were the worst. I put weight on when I went on T4, I think the lack of conversion must have impacted on the T2 element. Just a theory of mine. I spent another 10 years being further fobbed off, with every lifestyle excuse they could come up with, and depressions in there too. Gave me AntiD’s once they did nothing.

Then the said. -Age! I was 48. Told them it was not my age 30 years ago, and was not my age now. I had watched my friends in exactly the same situations all managing fine. the story goes on, with more fobbing off but eventually got GP to support me in seeing Dr P. Who was a lifesaver, and since has been so for my son. A wonderful knowledgeable and sensible man. I will be forever in his debt.

[MichelleHarris]

I am so cross about this T3 issue ruining lives. People in the UK dont know. I buy my own NDT and I shouldnt have to because Thyroxine was literally poisoning me x

[UrsaP in reply to MichelleHarris]

Totally agree. Michelle. There is a lot of work being done by patient groups volunteers mainly, - I’m with ITT, but there is also TUK, TTT, and others, we are all working together to try to get this sorted. The joint working group are working with Lord Philip Hunt of Kingsheath and Lord Bowrick, talking to NHS bods and such. We have to get this sorted. The new guidance is not going to help!

[SusieW2]

Yikes! You've had it rough. I have Sjogren's with dry eyes and mouth as well as Hypothryoidism. I've been luck to have great doctors and take hormones replacements including testosterone along with vitamin D and Fish oil.

Sjogren's, as far as I know, doesn't have real treatments, only of its symptoms. So whether or not you have a diagnosis, doesn't mean much in USA as far as medical treatments.

I do have much worse dryness in my left eye so it not the same bilaterally. And it makes sense that you would have more ulcers on the left side as the dryness leaves your eye more vulnerable to infections and injury.

I've found a lot of things I can do to take charge of my self-care to support my out of whack body and thus to feel better. I believe that a lot of autoimmune conditions arise from our bodies misinterpreting substances and producing an immune response to fight off the perceived invaders. So anything you can do to reduce inflammation is good. I've eliminated many things from my diet that cause inflammation, eczema and digestive upset. This has helped me feel a lot better. For me those things are all grains including non-gluten ones and high acid foods like tomatoes and citrus fruits. If I'm generally feeling good, I can cheat a bit and have a taco or gluten-free cookie. My long-term eczema has all but disappeared with this diet. I think it was a hyper-immune response to those foods.

Here's a good book about inflammation that posits each of us has unique weaknesses in our systems that react first when we carry more stress than our bodies can handle:

The Autoimmune Fix: How to Stop the Hidden Autoimmune Damage that keeps you sick ... by Tom O'Bryan

We have a couple of doctors who are dry-eye specialists. I recommend finding one if possible. They suggested was taking fish oil or another source of Omega 3, 6 & 9 which made a big improvement in my dry eye. It was like pushing back time a couple of years.

They also recommend warm, wet compresses over your eyes and an eye-lid wash product. I get one made by TherTears.

Also a Naturopath suggested increasing my Vitamin D intake to get up to a normal or above normal level. That and Testosterone cream has reduced my drowsiness.

I also have dry sinuses which can be painful and I'm prone to sinus infections. I have had sinus problems since adolescence. I found an essential oil for sinus congestion that helps my sinuses to drain so I can avoid sinus drugs and use only saline nose spray which is cheaper. If you get a good quality oil you can dab it around your nostrils and use it in a diffuser.

I also get sores in my mouth and lips, probably a response to foods as in my eczema. I take a homeopathic remedy called Natrum phos which is just Sodium Phosphate that has greatly reduced my mouth and lip sores. It’s available at 1-800homeopathy.com.

Good luck and if your doctors won't take care of you, take care of yourself.

[UrsaP in reply to SusieW2]

Thank you for all the information. I had trouble getting GP to retest Vitamin D even after they issued a loaded dose and told me to thereafter source a maintenance dose. I know I have VDR genetic polymorphisms which could be impacting. I do take a maintenance dose but doubt it is getting it to high range or above. I do try lots of things with my eyes, nothing works for any length of time.