Similarities with Post @Hoofprints

[UrsaP]

Hoofprints

I didn’t want to hijack your post with such a long rant from myself.

What a dreadful situation you are in. I agree that Covid and Brexit should not be a reason to reject your referral. You are entitled to a second opinion as has been said.

You post caught my attention as there is a lot in there that I can relate to.

My main problems for years were thyroid related (or so I thought - now - who knows)

I suspect I had problems all my life. At 18 I was referred to an endo who dismissed me for a year, then started testing, then couldn’t make his mind up as there was/wasn’t/was....etc something. Leading to a dismissal. It took me another 10 yrs to get a Hypo diagnosis another 20 yrs on a medication that made me more and more ill until I couldn’t work. Throughout this time I had intermittent eye problems, ulcerated eye, always the left. Saw a specialist on and off over these years.

About 14 years ago, I started querying Sjogrens as my eyes were permanently dry and my mouth increasingly so. I was issued mainly eye drops and nothing much more done. Eventually the anti La/ro were done and negative so that was it.

About 4 years ago I had problems with my prescription going from the settled reading glasses need to needing verifocals within about a month, changing with changing prescriptions in between. I was referred back to the eye clinic. A few days later I had a phone call telling me to go back to eye A&E as my referral was rejected. I tried but could not get a reason why. The rejection was from a specialist I had seen many times for ulcers but not in recent years.

Eventually my eyes settled and glasses prescribed. The following year my eyes were the same, then in 2019 a week after an eye test I went to pick up new glasses to find they were useless. Another eye test showed it was my right eye that was showing different even though the right vision was as clear as a bell the left blurry. The optician referred me to the new specialist, I got the impression the other had left under a cloud.

The new specialist saw me, but is was a rejection in all but name. He sat with his arms and legs crossed just repeating that it was ‘opticians, if you had two tests on one day the prescriptions would vary’ he said, over and over. He said I have keratitis/herpes simplex. A diagnosis I queried as it was only given about 15 yrs into indecision. He replied that it was the only thing that explained the ulcers in one eye only. I mentioned that lupus and such can affect only one side. He adamantly dismissed it was that. He superficially looked into my eyes, to tick a box, I’ve had enough eye exams to know he was not really looking.

I left there with nothing but disheartenment.

Last year, I was in some sort of flare. I have been saying to my Drs that I get flares and have done all along, up then down.... as per usual ignored or told that doesn’t happen.

I saw my GP about unusual bowel and bladder habits and whilst there I asked my Dr how I could get properly tested for Sjogrens (if I had to see a Dr I’d make the most of it!)

She did agree to see me and talk to me further and bloods were taken, funny enough it was the TFT that concerned them more, my TSH had risen T4 almost non existent and my T3 was well below range, as I’m on T3 only that should have been the concern but it wasn’t, they couldn’t get me to another endo fast enough! (more about getting me off T3 I suspect)

Bloods did show a weak pos ANA and a speckled patterned IgG. And I was referred to rheumatology. I asked to be ref to the Lupus clinic in Bham City.

Covid hit.

Phone call appt with endo was initially v good I explained other things going on and affecting my Thyroid meds. He did send me for comprehensive testing during C19. But my following tel appt was a very diff conversation. He was flippant and unhelpful...Jekyll and Hyde! He even suggested that since he had only just com into my case, and didn’t know how secure my diagnosis was (30yrs previously!!) that perhaps I could stop my meds and see how I got on!!!! I declined that offer.

I suspect by the 2nd call he had my file and there is something on there.

My tel appt with the Lupus clinic specialist was a case of can’t see you, can’t diagnose over the phone so postponed.

6 months later, I saw a very nice Dr at the clinic who pointed out follow up tests should have been done following my earlier bloods, but instead my GP had referred me and Covid put paid. He agreed lots going on with me, and acknowledged the sicca symptoms. But would not diagnose without specific bloods. They did tests, same ANA and IgG but no specific pointers. He assured me that it would not be the last time they saw me.

In Dec last year, following the basic blood tests, ie CRP, the main specialist rang again to dismiss me. I queried the sicca symptoms and she agreed to refer me to eye and dental clinic for management of symptoms.

In March I was at the eye clinic. I have heard nothing from the dental clinic, despite chasing.

The eye specialists immediately diagnosed connective tissue disorder and plied me with with a mountain of different drops, gels and treatments. They explained they could not redo the specific testing as it was ’too soon’ and the labs would refuse their request, it was 6 months since the previous tests?

They referred me back to the lupus clinic, in March. I have heard nothing back from there, again despite chasing.

I’ve since found out that the Lupus specialist is not actually a lupus specialist, the specialist retired from there a couple of years ago.

I get the impression that there will be no diagnosis unless there are specific bloods to back it up.

I spent decades struggling with fibromyalgia symptoms, chronic fatigue and increasingly worsening migraines. Much of this stopped when I swapped from T4 to T3 for my thyroid. But I have always had flares of fatigue and the migraines and eye disturbances are increasingly worrying. Insomnia and pains in hands and feet, swelling fingers, on the top of my feet, all common. Itchiness, something I’ve had since a child, I did have mild eczema but when I grew out of that the itching didn’t stop.

My gut feeling is that there is a push to reduce diagnosis, maybe because there is less funding to help us, and less specialist to help us. I have asked my eye specialists if I could be re referred to a Sjogrens specialist, but the last request was refused as they saw no reason at that time. I going to wait till my next eye appointment and if I still haven’t heard from City Hospital then I am going to insist on seeing the head specialist myself to ask.

A very knowledgeable lupus friend of mine has come across documentation regarding stomach problems and Sjogrens which I am now looking into. I have no idea what connective tissue I have or how it is affecting anything but my eyes. But something is affecting me more and more.

A few years ago I contacted a well known public health journalist to ask if he would write about the T3 ‘crisis’. His response was that he didn’t write on that topic as he got too much grief from ‘both ends of the spectrum’. Surely where health care, doctors and patients are concerned there should not be a spectrum? The story is right there. What a coward I thought!

I know how hard it is to keep fighting the system that seems to be so against us. But what else can we do, we have to fight it for ourselves and for the future generations, this situation is only going to get worse with the C19 debt incurred. But we, like the next person, deserve the same level of care as others.

This total reliance on blood test (to cover indemnity?) has to stop. We, patients are the best 1st hand evidence that is happening to us.

I wish you all the luck, keep the strength and faith and fight on.

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Hi. I’ve read your post and feel so frustrated for you and others. It really ought not to be so hard to get a diagnosis of Sjögren’s - but it invariably is. Same goes for Lupus.

I do think thyroid campaigners get a bad name and this might be part of the problem for you as it’s probably on your records. I’m not saying your campaign is wrong of course - just saying that like other campaigns relating to medical gaslighting - our patient reputations can just sink further and further into a mire and we then can’t fend for ourselves against the weight of medical opinion. I recall being told about T3 many years ago by a woman married to an MP who is now a Lord. I think I decided privately back then that this wasn’t a battle I had the stomach for, given my multiple autoimmune status. If she couldn’t get anywhere with her clout and ferocity then I knew I certainly wouldn’t.

I don’t really know what to suggest for you apart from advising that if we have rare conditions we have to choose our battles with such care. Hypothyroidism is common and the T3 battle is impossible because there is such a vast divide now between the patient and medical communities. Most doctors are aware that colleague’s reputations have been built and then destroyed because of it and have learnt how to deflect patients with the label of “T3 trouble maker” now I strongly suspect.

Heaven knows how I managed to get past the thyroid debate myself but somehow I did. I think maybe it was because I already had been diagnosed with inflammatory arthritis and spent a month in hospital with serious, life threatening symptoms finally culminating in sepsis - that my patient reputation changed.

After this I started approaching each encounter I had with a bad doctor differently. I did this by writing a letter to the doctor in question and copying in all involved in my care.

Each clinician who received a copy grew worried when they realised that I was sharp and very persistent and was prepared to humiliate them in front of their colleagues if I felt this was necessary. In a sense I became like an unpaid lawyer and I also learnt how to enlist the help of good doctors I encountered along the way.

It’s such a minefield of course. But I finally discovered that when my free T4 is low and my TSH is above 1 my ANA titre goes up. And I found that the pattern was rare and pointed most to scleroderma and Myositis. I also learned from incidental encounters with good clinicians, who had enough confidence in themselves to explain, that I’d had other unusual stuff flag up along the way which couldn’t really be just dismissed.

Also my brief encounter with T3 was not good so I traded in T3 for more T4 and it worked. And GPs and the endo were so relieved that I was then able to focus on rheumatology and get a lip biopsy. This followed an urgent colonoscopy showing severe constipation - almost a perforated bowel. Also having confirmed small fibre neuropathy - often misdiagnosed as Fibro - finally led to me being definitively diagnosed with Sjögren’s.

It hasn’t solved everything having two solid diagnoses of autoimmune diseases now plus a third that divides opinions and fourth and fifth and sixth confirming my guts are now failing. IBS-c it wasn’t. But I have discovered that once doctors in the same hospital have opinions that conflict you at least have them arguing amongst themselves rather than with you. And this is when you have to find someone someone bigger than them with more expertise and clout to arbitrate and give an objective overview.

It’s like an impossibly exhausting game of chess we would never have willingly chosen to have learnt to play. But enter the medical version of “Queen’s Gambit” we must.

Along the way I’ve noticed that bad doctors are usually bullies with massive egos to boot. They fear patients who are prepared to do whatever it takes to show them up in front of their colleagues. So if I know that something is going really wrong with my body and they aren’t helping me, or are actually blocking me - then they have learned that I’ll be back having found a different route to get the help I need - and make them look like twats along the way. I don’t take any prisoners.

Like many here I have acquired a very good understanding of my own blood work and imaging and found that it does usually support my arguments - so I’m lucky. I can evidence things if I have to and they know I won’t back down once I’ve got the bit between my teeth. I have also learnt to avoid the battles that won’t get me far such as getting a diagnosis of EDS. I also know to praise good practice where praise is due and only go to war over the very personal because this way I’m more likely to help others by default. If I tell my story in brief to a decent clinician who can see my notes then they say stuff under their breath such as “oh good God” as happened a few days ago with a nice rheumatology registrar during a phone review.

Also there are platforms you can use like Care Opinion and someone has to read and reply and this may actually bring about change behind the scenes. There are true experts out there whom I have found to help me occasionally so I get what I need. In this way I navigate by prodding and poking my way through blind alleys and out the other side - harnessing my anger, sorrow, humour and fatigue wisely now because I don’t want to keep hearing the words “sorry but this is irreparable damage done”.

You can’t win the T3 battle for others. But corneal ulcers have to be explained and treated appropriately and so does Lupus and Sjögren’s. Fibro doesn’t cause those ulcers. The rarer autoimmune patient communities aren’t big enough to fight on mass and the systemic treatments aren’t available to buy online.

So perhaps you could write something publishable about your eye department and current situation on Care Opinion? I don’t think anyone could sensibly argue that Sjögren’s or other systemic autoimmune diseases always show up in the bloodwork. So it’s always worth pointing out that the term seronegative exists for a reason and there’s also always the risk that seronegative can become seropositive. Psoriatic Arthritis is always seronegative for example and this is hardly a mild condition. The founder and former CEO of NRAS has seronegative RA and has suffered much erosive damage along the way.

Best of luck xx

[UrsaP in reply to Hidden]

Thank you and you did make me laugh, you are very determined...the best way to be. I do suspect there is possibly something on my file, but I doubt I’ll ever find out for sure. The thing is I have never been rude, aggressive or any such thing with any doctor, nurse or admin staff at any surgery, but I have asked questions and insisted on certain tests, eventually. But the time I ever go to the Drs it is with something that has been bothering me for months or years. I hate going. The T3 situation is a night mare but we will keep fighting it.

My hypothyroid was recorded as ‘acquired’ as by the time of the diagnosis no one could define what started it. It is dreadful that so many are left trying to fend for themselves, especially as by the time we get to this stage there are so many more comorbidities confusing the issue. I’m starting to think that Lupus or such might have been my underlying problem from birth/childhood.

I think it is very sad that all the experience we all have has not been collated and put to good use.

I do think that a well organised and well thought out comprehensive survey across all these AI and hormonal conditions might start to show patterns.

On a different but possibly connected line - and against friends ‘advice’, I recently had my hair permed. I have had it done a few times over my lifetime, laziness really I hate messing with my hair, just want to wash and leave. In the past I have had an odd patch that didn’t take well. This time, it was a joke! It looked like a perm in the death throes, dropped frizzy dry mess. . The hairdresser redid it a few weeks later, and still it was just an awful frizzy mess. I’ve just had it cut right back today, which has helped. But I do think that my hair is a good judgement of health and at the minute something isn’t right!

I have lots of signs of possible Lupus too, flares, facial rash that comes and goes, with ‘heat’ , sudden slumps of energy, itching, intermittent rashes,...lots of other stuff too, but I just can’t get to anyone to diagnose anything for sure.

I will look into that Care Opinion you mentioned and will think about writing something.

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Sending you support and strength to fight another day 🤗