Professor Hughes / Jordan did advise that Sjögrens and accompanying hypo thyroid should be checked for.
I asked my GP to run the " advanced " thyroid panel on the advice of Mary and Lynn. This is what our "advanced panel looks like from a GP send out . I took results to my Rheumatologist. From these results he confirmed sicca or early Sjogrins. My RF has been sky high for years with no pain st all in joints. But I do have " undifferentiated connective tissue disease."
He said no medication for low thyroid- it's very mild. He said medication is harsh on heart. Artificial tears and carry on.
I agree. Yes? I don't seem to be having trouble otherwise- except dry skin and eyes? And internal connective issues but nothing can be done about that.
Rheum said I'm also progressing more toward to Lupus side of the spectrum. He had increased plaquinil to 300mg but I really can't tolerate it. I got to 200 for only a week and became violently sick. He said I may have become toxic. I've stopped it all together . I feel so much better since stopping it.
He reduced plaquinil to 150. He said because I'm only 5'3" tall and weigh 110 pounds, it's probably enough.
He said plaquinil can slow the progression of the "advancing lupus and Sjogrins symptoms as much as 10 years."
I thought I'd share. I hope you all can tolerate plaquinil better than I can. ( no we can't get Zentiva here. I've tried.)
APsnot Fab and Mary- others who are seasoned with the lab values- indeed are you in agreement this is very mild? ( it seems to me to be.) ok not to be on medication? ( I'm very happy to not take medication- but know NOTHING about this.)
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Dr Hughes told me I would need a schimers test- the strips of paper in eyes. There are also specific anti bodies in blood work I believe. (?)
Clinical exam will reveal a lot- Dry eyes, dry mouth, dry skin, etc. this is what I had.
Specifically in my case- because you ask- any men reading- look away now) : connective tissue disease internally. Do you remember I private messaged you about OBGYN problem? It got worse...
This is actually important so I'm going to go ahead and type it here. Maybe other women have have this also, or might in the future- so be aware:
In October, three years ago, I had an emergency hysterectomy. I stood up one morning and my pelvic floor muscles did not do their job well. ( strange...) my Lower large intestine, small intestine, bladder, and uterus prolapsed (dropped, or fell through - the pelvic floor muscles became too weak.) You get the idea... it turns out it was because the connective tissue is not holding up. The " integrity of the connective tissue is compromised." My surgeon said when she got in, the tissue was what surgeons call " wet toilet paper connective tissue." She had to pull some muscles from my back to stitch onto for better adhesion. She said she normally would see this problem is 80 year old women, not a 45 year old woman.
I have had so many abdominal surgeries and OBGYN ( ectopic rupture, etc) surgeries , hernia repairs, appendectomy, gall bladder failure, bowel ileus, that my navel and umbilical hernia surgical sites in that area are weak- ( weak connective tissue) that my surgeon chose to do this big surgery vaginally. " up and out!"
So that's how it was done to avoid a big incision in the abdomen again. The final part of the surgery was to permanently sew shut the vaginal cuff with permanent stitches.
But guess what happened this Jan 2017? I started "spitting out" those stitches! I posted thinking I had a urinary track infection- cramping and bleeding. Or maybe INR was too high. Poor me- I had only been 7 weeks diagnosed with APS and a large DVT.
My body has now "spit out" 3 permanent aqua colored perfectly intact looped , perfectedly knotted permanent stitches. My Obgyn has rarely seen this- and then, maybe only ONE stitch, not multiple.
So this problem of the connective tissue made my Rheumatologist re evaluate the diagnosis of " primary APS, and classify into a third and new category. " undifferentiated connective tissue disease APS." This made his confident of the sicca/ Sjogrins along with the dry eyes and mouth. But mainly the surgical story from my surgeon confirming serious internal connective tissue disease.
I told him that's sort of how the History of Hughes syndrome got started - Dr Kham. Wrote that it was an "atypical connective tissue disease" from the onset.
There are two autoantibodies that are commonly looked for, but some people are diagnosed by lip biopsies. I was diagnosed by a "bone dry" Schirmers test and a new Sjogrens panel that isn't universally accepted. Back in the 80s I was diagnosed with just symptoms.
You may want to look at low thyroid symptoms and see if you think you line up with them. If you don't, then maybe no thyroid treatment. If yes, maybe you would want to persue it. I have a border line low thyroid and I get a lot of how synthroid causes cardiac problems and osteoporosis from my endocrinologist. Some patients take thyroid according to symptoms, but endocrinologists in the US mainly go by tests.
I also have UCTD, but more like lupus. Have you looked into Ehlers-Danlos, which is abnormal connective tissues.
I'm having Classic early sjogrins symptoms and hypothyroid flagging on the test. That's all I know. I know my auto immune numbers (RF) are insane high but I do not have RF. I was told I do not have Lupus, but rather am on the spectrum and fulfill many of the " criteria and have had one positive ANA test but the double stranded test is negative.
I really am not testing positive for Lupus, but am on the " Lupus sliding scale spectrum, and am sliding more towards Lupus. " hopefully I will not ever be full Lupus, but the scales are sliding more that way, he said.
It doesn't really matter unless we wanted to change Meds- or if my kidneys were in trouble- which they are not. They are totally fine. Never biopsy APS Kidneys anyway!
No, my joints are fine. Nothing strange.
Classic APS, Lupus like illness, hypo thyroid, and sicca / early sjogrins likely. Undifferentiated connective tissue disease is likely the Lupus like illness.
Isn't lupus considered a connective tissue disease? Because that would explain that. Being on the Lupus spectrum?
Yes, lupus is a CTD, as is RA, as are a few others. I figure my lupus-like UCTD, is lupus in the symptoms I have, but not as bad since my organs are in good shape. Except perhaps for my nervous system. Right now I have painful polyneuropathy that flares in the sun. Even though I had been diagnosed with lupus, and MCTD, I think UCTD is a pretty good description of what I have had for 40 years, with the Sjogrens and APS.
It is too bad you are having trouble with plaquenil. That really helped me once I was treated with it.
Yes, I meant the Schimer test. So my Opthomologist?
My husband is ready to pack me to London. I'm thinking to establish myself with professor Paul Holmes. I'm wondering if my neurologist might find out the exact protocol for some testings he is doing regarding poor absorption of glucose in the temporal region of the brain. I begin my seizures there and ICU coded once upon administration of a glucagon injection to slow the bowels for imaging... I'm putting two and two together here but likely incorrectly. I'm going to speak to my neurologist here about this . I have to wonder of Dr Holmes would find this info useful or superlative. Apparently he's conducting a study. My neurologist did a fellow just down the Thames from Guys- so yes. I may be back.
And upon your wise advise I asked for all the other checks- they were fine...nothing flagged out of range. or were they????
I'm thinking now you are going to say they are skirting low.
They are barely in range at lowest level.
Iron is 86 , with ref range (60-180)
Ferritin is 16, with ref range (10-158)
Vitamin B12 (pg/mL) 489
Transferrin is 273 with ref range (203-362). This ones not quite as low.
The one thing that is always off - always... it flags- is my CO2 is low. Usually runs about 17. ( ref range 21-31)
Why? I don't smoke! I've never smoked. I don't have COPD. No wheezing. My lungs are perfect. Always clear as a bell. My oxygen sats are perfect. I can feel breathless, but not often. Not during a routine blood draw.
I have perfect to low running blood pressure.
Is this common with APS? Sludge blood not delivering oxygen properly in lungs?
I am not disagreeing with you. My thyroid has actually atrophied, and I had a out of range low T4, and was really difficult to get a endocrinologist to treat me with a low dose of synthroid in the US. In the UK there are people self-treating with T3. But in the US we can't import these things. I'm trying to get my endocrinologist to a least give me Armour thyroid, and she won't do that. (I even have a genetic abnormality that suggest it might work better for me.)
Kelly, if you want to look for a doctor that is more open, you might try a more naturally mind doctor. For me I'm sort of exhausted getting myself treated for my bigger problems.
Oh, that's terrible. That would explain probably the mind set difference between how Lynn is responding to my numbers and how my internal medicine physician and Rheumatologist are reacting. All I know is my WBC is chronically low ( 2.9) and so are my neutrophils. (1.7) They say this is normal with APS.
Being so worn out ( I'm guessing low thyroid?) is rough with a compromised immune system. I can't do anything about my WBC being low- but it would be great to get the thyroid boosted to have a chance to get through the day with a little more energy.
Thanks for your time and attention to these matters. One more favor as you can see I'm in a great ocean in a tiny row boat with one broken oar...
What do I do to fix these low numbers?!?!?!?!
I have one good GP who is frankly relying on his sound internal medicine background, plus you ( patient and admin / Hughes for specific Hughes syndrome guidance as our needs should be treated to Hughes specifications. On Behalf of Dr S and myself, please advise. ( and will let you know when wheels are on Heathrow tarmac. You can accompany me and my hubby to meeting w/ Dr Holmes if you like. The more the learn- the better!
Thank you! You answered as I was typing question! Enjoy the conf with Mary, tell her hello and Thank you for her hard work- hope she is well. ( and her children. It really is quite something when our kids flag with this. )
Kelly, have you been tested for heavy metal toxicity? Is your water supply OK? In other words, are you being poisoned by something in your environment? I am praying for answers to your problems.
We have a beautiful private well deep in the trinity. We even were lucky enough to hit a sweet spot within the recessed shale called cow creek. Ueli, ( hubby) being an architectural engineer, is a fanatic about water purity. We don't even run any of the lines that are cold through a softener. Hot only. We have only PVC - and we have a setteling tank before water even reaches the house . So triple checks.
Other toxic elements in my environment... a teenaged boy? Ha! Actually he is great now that we are past middle school!
( we do have a contankerous old cat...)
Oh, Rosemary. I just think it's a very hard case of APS in all it's glory. It's sweet prayers and friends like you that do help.
I'll ask my dentist about any fillings. ( mercury?) Is this what you also mean?
Pesticides, herbicides, nearby chemical plants, prior use of the land. Just wondering if you are the canary in the coal mine. Maybe it wouldn't hurt to get tested.
Did I read correctly that your Doctor said thyroxine was bad for the heart? Never heard such nonsense. I’ve been on it for over 20 years - hashimotos and if untreated then TSH has been as high as 45.
My SIL was just borderline low in T4 but felt she needed treatment. Dr was likewise reluctant and told her that treatment would be bad for osteoporosis. I think they trot out such stuff when they don’t consider treatment warranted. My levels are obviously rubbish without treatment and I’ve not once been warned of any dangerous side effects and as I mentioned have been on it for decades. Now on 200mcg.
And wouldn't one see an endocrinologist rather than a Rheumatologist? Or am I mistaken? APSnotFab sees an endo she mentioned. And you, Puska? Which specialist do you see for a hypo thyroid? And is it Sjogrins that you have? Hadhimotos? Or, just simply "a low thyroid?"
He did not tell me, I did not think to ask. He just said ," your thyroid is a little low, looks like you are developing Sicca, or early Sjogrins which a low thyroid can go along with- as you know can be see with the anti phospho Lipid syndrome. At this time with level so low I don't think it needs to be addressed with medication because it can be hard on the heart- cause problems. ( I am flagging for very high cholesterol- we are starting Crestor. In fairness to him- maybe this is why?)
My GP’s seem reluctant and have always been, to send me to Endocrinologist. Always. The rheumatologist on the other hand saw my thyroid panel for the first time last week and was shocked by the high TSH when on treatment and suggested one. Shes always known I was on thyroxine but had not seen the actual tests. And I gave her the old test for thyroid antibodies where I test >1600 for TPO where level should be <100 and she was even more interested. But even again yesterday GP said referral not needed. I have bloods retested in 6 weeks and if no better I’ll insist on it.
I don’t see the rheumatologist for hashimotos but APS/SLE but now she’s curious about it too.
Wow. A new language of abbreviations to learn. I have absolutely no idea what Martian language you ( APSnot Fab...) are speaking!
I'll google all this. Don't worry. But what syndrome is it exactly I look up? Ann in NY sent a thoughtful link to sjogrins- but this is just low thyroid I need to look up? To learn this new language of abbreviations and T3 and T4 and something about getting into cells Lynn said. And iron is a catalyst apparently for that process to happen. Bio chem. Let's go!
T4 and T3 are the ‘action’ parts of the thyroid cycle that are produced by the thyroid gland after stimulation of TSH from the pituitary gland. One hormone is converted into the other. When T4 is low then more TSH is produced. If that’s higher than 4 (usually) then clinically you need treatment with thyroxine. High TSH and low T3/T4 means some part of the cycle isn’t working, usually the thyroid is under attack from antibodies. And TPO is one of these antibodies. (I’m not so heavily into the iron levels etc as they’ve always been fine. ). My mum was hyper then hypo in her teen years so it’s always been part of my life. I turned hypo in my twenties. Auto immune issues are rampant in the females in my family now covering 4 generations.
So looking at my notes- does not show I had anti bodies drawn.
I don't feel too unwell, but do have central and autonomic nervous system damage, so best to keep an eye. We have assumed it's all to do with innervation problems from APS / poor blood flow. Could be a little of both. Who knows.
Indeed. There are so many crossovers all the symptoms get so tangled up. I think really they need to review the way they categorize/diagnose all auto immune illnesses. My rheumy writes research papers and my awful thyroid panel has suddenly spiked her interest in line with all the other auto immune stuff I have. Plus she is also my niece’s specialist who has a very different version of SLE to me, her thyroid is fine and she does not have APS.
Very interesting, the connection With cholesterol and thyroid. I did know about the connection to APS. Apparent mine is in the "shockingly high " range.
( professor Natasha Jordan's Irish adorable Irish accent still rings in my ears. "Quite shocking, actually.")
My daughter looks at me every time I generously butter my toast and tries on her best Dr . Jordan Irish Brogue... "Mother, that amount of cholesterol laden butter is...quite shocking, actually!"
Hi I have been diagnosed with sjorgrens but am leaning towards lupus , my grandmother was always worried about me as a child ,she was particularly worried about my hands , my gran was told she had rheumatism , my father her son died of myloed lukiamia which I have now discovered is linked to sjorgrens , I had sepsi 6 years ago before that I had no symptoms since then I have had so many test all of the one I believe you have quoted above nearly , I have organ issues and joints to the point I have to use a wheelchair , I can find no group on HU just to support sjorgrens ,I have been having a terrible flare for the last 3 months and now my joints this time seem to be the target ,in the beginning of the year it was my uterus that was the target , has anyone found a way here of taming this savage beast that seems to run amok in our bodies , I seem to have a system attack every 6 months .
Thank you for all the information contained in this post it has been most useful !
Many things ring similar in our case, but I'm not reading the " big tie together " of Hughes Syndrome in your blood work up. For us, this is also telling- as it can also interfere, for example in my case leading to adding all surguies, microclotting of abdominal organs and bowels.
But yes. The connective tissue not holding up I believe is the " Lupus like, or Lupus spectrum " disease and now I believe the lazy thyroid and early sjogrins. Sounds like you and I are similar in our course but you are way more dibilitated in joints. Mine are just fine- a little stiff, mornings only and only in fingers. It's the tissue internally that seems to be " wet toilet tissue.
So as I was going about my morning thinking about your sepsis, I did want to mention something I'm sure you are aware of, as I presume you are APS positive. Professor Hughes often speaks of " two hit theory." My Rheumatologist in Texas also references Professor Hughes theory on this. Going by this principal, I assume it may hold true across the other associates auto immune disorders and their link with Hughes syndrome. I'm thinking the sepsis was another "hit" for you, and thus came tumbling down your path the epi- genetic (?) " other" auto immune tag alongs.
Morning thoughts from Texas, Christina. Sorry you are having such a very hard case of the joint flares/ attacks.
Morning you will have to forgive me if I don't reply straight away I am not getting notifications ☹️ But on topic thank you for replying to me I am floating about the forums trying to make sence of where I fit in these days on HU , don't really know where to go for advice half the time ,but on main topic my gps main concern is the fact my father had myloed leukaemia and that's a direct link with sjorgrens,he had a lot of joint problem for years and the doctors put it down to his job and hobbies of fitness and being a bricklayer/ and builder . They assumed instead of taking appropriate test and being the man he was he never complained of pain but his knees acilies tendon broke he had kidney issues in the latter part of his life and it all seems to link. Anyway must get up , builders due in to insult my untidy home again today !
Hi, for anyone thinking about sjogrens, which I have, you can Google BSSA British Sjogrens Syndrome Association.
BSSA have been a great resource for me. They also have a telephone helpline. If anyone joins as a member, they receive not only much support, contacts, but also newsletters, that are very informative about the condition, as well as full of, great tips for managing the disease.
Yes, it is a beast of an illness. So little awareness, and the fact it is often, an invisible illness really doesn't help.
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Fibro' check up.
Finally been to st Thomas', and feel safer and in the right hands!!
Hi I’m back!!!
