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?