Hello, I wonder if anyone can advise me. I’ve struggled with worsening sicca symptoms for years, the dry eyes from childhood. In the midst of a long and bad flare, I eventually got referred to a ‘lupus’ rheumatology clinic, following a weak pos ANA and speckled IgG, blood result. This was as Covid hit, and it was 6 months before I actually saw anyone. Further tests (which should have been carried out by GP 6 months earlier, but weren’t) were undertaken. Although the ANA and IgG were the same, the lack of Anti La/Ro saw me having basic bloods, including CRP only, a few months later and as this was only 2, I was quickly dismissed as no connective tissue found. I questioned the dismissal when clearly sicca symptoms present and was referred to the eye and dental hospitals for ‘management' of the dryness.
3 months later the eye hospital confirmed obvious connective tissue in eyes. This is being treated and is ongoing the last 18 months.
I eventually got to the dental hospital. They acknowledge I have all the clinical symptoms, but they put more weight on the Anti Ro and La, which I didn’t have, so my scoring did not meet the criteria for diagnosis. They also were discouraging about having a lip biopsy. I got the impression that there is a distinct push to ‘not’ diagnose Sjogrens.... possibly other conditions, having taken 10year + to be diagnosed with hypothyroidism, (30 years ago) despite seeing a specialist as a teenager, who couldn’t make their mind up, I wonder if this is now common practice...don’t look for, don’t diagnose, don’t have to treat, save money. I’m getting very cynical in my old age!
Thought they did discouraged the lip biopsy, outlining the ‘risks’ the discussion we had did eventually leave it open for me to decide if I wanted it. On refection, because I have the clinical, low weighted, (@ 1) symptoms but not the biochemistry, Anti lo/Ra, (higher weighted @ 3) and because I have hypothyroidism, and some symptoms of possibly lupus, I decided that it was a ‘risk’ I would take. The lip biopsy, whilst still not 100%, is, I’m told, the most reliable diagnostic tool for Sjogrens. Which questions why then it is discouraged when the weighting is so ‘important’ for diagnosis?
I thought that if the biopsy is positive all well and good, I know where I am and can move on with managing it alongside the hypothyroidism. Flare ups, of whatever it is, send my usually settled thyroid levels out of kilter and this is something I find doctors have so little understanding of, with the sole reliance on the TSH blood result.
If the biopsy rules out Sjogrens then at least my rheumatologists can start at that point to identify what else is going on.
So. Yesterday I had the lip biopsy. I got the impression that it was not too easy to find and harvest the required number of glands, even though the incision was extended. I have 5 stitches, where I think one or two is more expected.
Whilst I can find information about Sjogrens, and inflammation on these glands, I can’t find anything about the impact of a ‘lack’ of these glands. I was wondering is that a thing? Can, Sjogrens/ sicca symptoms be caused by a low count of these glands or is Sjogrens or something else capable of destroying these glands, or can we be born with a low count?
I won’t get the biopsy results till July, but I am seeing a rheumatologist regarding the connective tissue issue later this month. I just wondered if anyone had any thoughts or might know of where further information might be found. IMO something is causing the sicca, if not Sjogrens then what?
Just to finish, for anyone due to have the biopsy or thinking about it, and I know we are all different but I have to say, in my case, the biopsy was literally painless. I was warned I would feel some tugging and pulling, I didn’t. Local anaesthetic worked fine. I was told afterwards my lip would be bruised and sore, and to take general painkillers if needed. I may be speaking too soon, but there is no bruising showing as yet and there is no pain. I am slightly aware of the stitches but that is all. I guess as the the wound heals it will irritate a bit, but all credit to the two ladies who did the procedure for me, they did a very careful and neat job.
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UrsaP
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UrsaP, we have so much in common, and I have so much to say in response to your post. I too have hashimotos and have had sicca for over 30 years. Getting all four tear ducts cauterized helped my chronic debilitating dry eye more than anything else. I have dry mouth, and the parotid glands on my right side have become swollen and painful twice within the past month. My ANA is 1:320 speckled pattern which likely means I have a connective tissue disorder. My SS-A and SS-B antibodies are negative. I have interstitial cystitis (IC); studies show there is an association between IC and Sjogren’s. Recently, I learned I have several small lung nodules (this was an incidental finding from a CT scan of the kidneys; the nodules may or may not be connected to Sjogren’s or be anything to worry about).
About the lip biopsy. I had a lip biopsy less than a year ago, and it was negative! I was surprised. Here’s what I have learned about lip biopsies:
A negative finding does not rule out Sjogren’s. False negative results may occur due to problems with the biopsy sample, the reading of the sample, or an inadequate number of representative glands. Early in the disease, inflammation may not have developed into clusters of cells that qualify as foci. Late in the disease, atrophy and scarring may predominate. The focus score may drop to < 1 as the disease progresses.
I believe the last two sentences of above excerpt apply to me. I believe I have had undiagnosed Sjogren’s for many years, thus the lip biopsy for me was a false negative.
A rheumatologist I saw one time had nothing to offer. He had a terrible bedside manner and admitted to knowing nothing about IC (my most challenging health problem to date). He clearly did not know much about Sjogren’s and was dismissive. He said there’s no way to help Sjogren’s anyway unless one gets vasculitis. WTH? I was already on hydroxychloriquine (prescribed by my urologist for IC; most drugs for IC are used off label). So I am cynical also and have little faith in the medical community, especially since covid. ( Don’t get me started.)
My primary care physician says I have all the clinical signs of Sjogren’s and that is what matters. A good percentage of people with Sjogren’s (40-60 percent) are seronegative. She referred me to a different rheumatologist who I am scheduled to see June 20. Not holding my breath that the new rheumatologist will have much to offer either. I have read and heard that rheumatologists know most about RA and little about Sjogren’s. Sjogren’s is VERY understudied. So I empathize with you…totally understand your frustrations. Don’t put all your eggs in the lip biopsy basket and count Sjogren’s out should your results be negative. Take care! Keep in touch!
This is so right on! The medical community knows little about SS and has few resources to treat it. I do believe that most auto-immune/inflammatory diseases are interrelated. Because we are all different, they manifest differently amongst those of us who suffer with them. I'm in the US. I was diagnosed on symptoms and blood work alone. I don't even understand much of what you've written. Doctors here don't seems to care beyond a general diagnosis and all are willing to treat my symptoms as available and provide preventative care as needed. I only take Salagen which helps to produce more saliva and a low dose of a thyroid supplement. I do take a wide range of supplements, vitamins and naturopathic treatments, have a restrictive diet and humidify my home.But my insurance allows me a wide range of doctor choice. So I have sought out ones that listen and take me seriously. I have also been lucky to have a relatively mild case. With that I am not a medical professional, I urge you not to fret so much over numbers and tests and try to find what works to improve your quality of life. best wishes for the future. We are all with you both.
Yes thank you. I myself have spent a lot of time, and money trying to find what works best for me and to manage the symptoms when drs have shown little or no interest. It was only because I believed I was in a long and quite debilitating flare, from about Oct 19 into the middle of 2020, that caused my thyroid blood levels to go haywire, and at that point I enquired about getting properly checked out for Lupus/Sjogrens. I have to say my GP was willing to listen and did refer me to my specified department, which I was misled to believe was a Lupus Specialist Clinic. sadly that was an outdated label. The main specialist having retired. The new one being less willing to conduct the relevant tests. It didn’t help that Covid hit around that time and appointments were postponed. Who knows maybe I have a variation of Covid, and hence the ‘flare’. Whatever it was or is, it has been ongoing and flaring up for years. I just want to know what I am dealing with so I can manage it properly, and remove some of the guesswork. I do wonder if these conditions affected men in greater numbers would the medics be so dismissive of them? Medicine is and has traditionally been based on male health, designed by men for men. Matt Handcock, our disgraced ex Minister of Health, actually said this in a public, women’s health consultation, issued a few months back. This same consultation indicated Menstrual Periods, Pregnancy and Menopause were ‘illness’ that women suffered from?? IM 'non medical, but female’ O, if women have problems during these ’stages’ of female life, then there has to be something underlying causing the problems, otherwise all women would suffer the same.
I agree with you that these AI conditions are likely connected. They do say if you have one you are likely to get others.
I take pastilles and sometimes use a spray for the dry mouth, but largely rely on sipping water. I wake a lot during the night needing to drink water. I tend to just sip as spend enough time tripping back and forward to the loo as it is! Everything is dry...skin ears, nose etc. Is that thyroid or Sjogrens? If we don’t know the cause how can we be sure of how to manage?
My thyroid condition has been much better controlled, and more stable, since I switched to T3 mono therapy 12 years ago, which does point to something else causing problems and blood levels to suddenly go haywire every now and again.
I will continue to manage the symptoms the best I can, with or without a diagnosis, I have no choice. I just wish Drs would realise that we are the best evidence they will ever have in front of them, of what is going on with us. Our symptoms should hold greater weight than unreliable tests. Sadly these days of law suits means that medics are often more concerned with covering their backsides.
One aspect of this is not seeing the same specialist twice....harder to pin a lawsuit on a department than an individual.
I wish you all the best and thank you for your response.
Apologies for the delay responding...been decorating! But yes, Seronegative Sjogrens was mentioned. But is that taken as being Sjogrens, it seems odd to me that they keep inventing names to avoid a diagnosis. A bit like ‘sub clinical hypothyroidism - where NICE say don’t treat as 50% might right itself. Yes it might but that means it also might not! It also means that 50% is overt hypothyroidism. So 100% of subclinical could actually be overt?
The fact that Sjogrens can’t be treated but managed, also a ‘repetitive’ excuse given. The dental specialist was IMO quite dismissive. One of the points I tried to make was that although the ‘management’ of symptoms is the same, diagnosed or not, having a diagnosis does make a difference insofar as that when there is a ‘flare’ which throws our bloods for the thyroid disorder and such, there is an explanation that is acceptable and understandable, without the diagnosis most GPs etc will not acknowledge the condition, we are then referred to equally dismissive endocrinologists, who also won’t accept the comorbidity on the basis of non-diagnosis, and we are deemed to be hypochondriacs, psychosomatic....offered antidepressants etc. His response was ‘we are taking you seriously’. Which I seriously doubt.
Following the failed referral to what was supposed to be a lupus specialist, turned out the actual lupus specialist had retired and had been replaced with someone who was clearly not a lupus specialists, and the new lady was reliant on the CRP reading. The re-referral following my diagnosis of connective tissue disorder in my eyes, was just ignored. My eye specialists have now referred me to another rheumatology department. I specified this department as a Professor Bowman has a clinic there, and I did ask to be referred to him. Sadly I doubt I will see him. He is supposed to be a Sjogrens specialist. We can but hope.
I’m not holding out much hope for the biopsy to show anything of significance - from the discussion, it seems that the dr taking the glands was struggling to get enough, and there was mention of them being very ‘small’. So the cynic in me is kicking myself for not asking to see the sample, not that I would be able to tell anything from it, but also I’m questioning why I have no bruising or pain. Just a larger than normal no of stitches. The Dr did refer to the fact that there was some previous discussion as to whether I should go ahead with the biopsy. So this was clearly noted on file. I now question was anything harvested at all or was it play acting? LOL, my cynicism knowns no bounds? But my lack of faith in medics grows. From what I can gather they look for inflammation so the fact that the glands were small likely indicates that they were not inflamed. I am fairly convinced that the odds are stacked against diagnosis.
Considering I saw recently that Sjogrens is something like the 2nd most prevalent AI disorder, but is rarely diagnosed, it does beg the question why?
Wishing you all the best. I’ll let you know what the result is in July when I get it. Not holding my breath.
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