Hi, I was wondering if I may possibly have a mild/ beginning stage of Lupus.
The test that I will post below was ordered by a Rheumatologist that I was referred to but after reviewing this and my other labs, he has expressed that he doesn’t feel the need to see me.
My platelets have been consistently low (but not terribly low) since 2017 and wbc has also been low until recently when the EBV reactivated. Other symptoms are fatigue, insomnia, joint and muscle pain on and off, neuropathy, dry skin, consistently itchy scalp ( i think sebhorric dermatitis), circulation problems, and constant red rashes on my chest and back/ shoulders (think this is due to food allergies) stomach issues.
I was diagnosed with Graves’ disease 11 years ago (now post rai and Hypothyroid) and have high TPO thyroid antibodies.
I recognize that other people have more serious cases than I do, and my case may look like no big deal, but I would like to know and get some peace. My primary doctor’s office is not regular about getting back to me so I will be looking for a new doctor soon. Thanks in advance
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JennaShi
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Hi JennaShi, if you have a peek at the SLE criteria in the UK guideline (academic.oup.com/rheumatolo..., you might recognise many of your symptoms and bloods - meeting 4 from 11 criteria leads to SLE diagnosis.
Fatigue is one of the most debilitating symptoms of autoimmunity most folks feel, so please don't feel your case is no big deal, especially with all of your other symptoms xxx
Thank you eekt, I will take a look at the criteria. I saw my endo today as had mentioned to Sophie and she thinks positive ANA is due to thyroid antibodies and low platelets are due to tah hormone not being regulated. So if thats the case I should be grateful. I do habe reactivated ebv as well so it seems alot of symptoms overlap. I wrote a more descriptive comment below regarding my ANA history if your interested.
Hi Jenna. My resukts look similar to yours. My ANA was the same 1.160 homogeneous and tpo antibodies >1000. I saw an endocrinologist about that. He said I am simply at risk of developing autoimmune thyroid disease in future and he suspects lupus but rheumatologist disagrees. Do you have overactive or underactive throid? The rheumatologist thinks the positiveANA was due to the high thyroid antibodies.
Hi Sophie, that’s interesting that he says that you are at risk for developing an autoimmune disease. High antibodies as those should have given you an official diagnosis of autoimmune thyroid disease. It doesnt sound like your Rheumatologist is concerned either. How are your thyroid levels?
Yes, I was diagnosed with Graves’ disease back around 2007 and 2016 went hypo. My PA says that the official name for my diagnosis os Graves’ disease post 131 and TPO doesnt mean Hashimotos, but more confirms Graves if that makes sense. Since going hypo in 2016, I have had 1 negative ANA and two positive plus a positive IFA. All have been 1:80 titres without thyroid antibodies being tested, until this recent one which above is 1:160 including TPO antibodies. I was also told today by endo, who know all this information that I have a positive titre because of the thyroid antibodies and that the low platelet count is due to my thyroid not being regulated. So we will see but if its only that tyen i should be grateful. I hope that you are taking care of yourself as well.
Hi Jenna. Yes he only at risk. There was no mention of hashimoto's. I'be only had one ANA test done and the result was the same as yours. So my rheumatologist is right by saying it's causes by the high tpo antibodies? I never really feel very well. It all starts in may last year. And have been off sick from work since July. With a range of different symptoms. The hardest to deal with was the extreme heat intolerance. It was horrendous at night. During winter and unable to sleep even with a fan on. It was like your whole body was on fire. Now it's a daily struggle with constant fluctuating temperatures. Do you suffer from this too? My tsh was 2.0 and t4 was 15 in October. It was tested again last week by my rheumatologist. Not got the restults back yet. X
Hi Sophie sorry to hear about how have been feeling and for your endo. He clearly is missing something. >1000 TPO antibodies clearly indicates hashimotos if you do not have antibodies for Graves’ disease (TSI, TrAB) are you posting your labs on here? The people in thyroid UK group are very knowledgeable and helpful. I often ask questions as well. Another way to gadge where your thyroid levels are is by your symptoms as well, for example: hypo can be: hair loss, fatigue, tiredness, sluggish, brain fog, low body temp etc. and hyper can be: anxious, heart palpitations, anger, wired etc. and some commalities are insomnia and have heard heat intolerance on both sides. Some these symptoms can also be things like iron deficiency, low vD, b12, folate etc. have you checked these things as well? Also your endo may not have said anything because more often hashimotos is not treated any differently than hypothyroidism. Nut it might explain some of your symptoms. Also not sure if you know this but you can be in range and not optimal and doctors more often worry about being in range than optimal.
Hi i always assumed that heat intolerance was hyper and cold intolerance was hypo. I also read with hashimoto's you can switch between both until you develop hypothyroidism. Can i ask what your symptoms of hashimoto's were or graves? My b12 and iron are fine. I am deficent in vit d. I have been supplementing for that now. It's hard when you know something is wrong yet Dr's insist there isnt X
Keep in mind each person is different and may experience different things. I have seen posts of people with hashimotos talk about being hot. Its good that those things are range, if you dont already know theres also a preferred range for b12 and vD iron as well. Are taking vD supplements?
And yes, I agree going up and down is normal until you go hypo.
I was diagnosed with Graves‘ disease in 2007 and stayed hyper. During that time I lost alot of weight, had a huge goiter and was told I was extremely spacy. Other symptoms included, heat intolerance, shaky, fatigue, wired, palpitations, pounding heart. I stayed hyper even after RAI treatment up until 2015 and normalized and then in 2016 labs revealed a tsh of 44 something and I was extremely fatigued, foggy headed, overly emotional, paranoid, fearful, and basically in bed all day. Other symptoms include achey body and joints, short term memory issues, mood swings, sometimes delusion. Hot and cold intolerance, slow thinking processing sometimes. Hair loss, low body temp. Slower heart rate for the most part etc.
Sorry you were suffering all those horrible symptoms. I get aches and joint pains too. My short term memory is terrible now. So forgetful. I also have a very overactive bladder. Urinating upto40 times a day. Extreme fatigue and lethargy. I'be not had hair loss. Just the texture has changed significantly. Previously in good condition now so very dry and brittle and breaks easily. This in turn also affects my self esteem. So the heat/cold intolerance could just be the hashimotos and nothing else? Yes I am supplementing vid d now. X
It unfortunately happens. And it spund like you are experiencing some hypo symptoms, your labs could verify if you are swinging around which happens. Pay attention to your symptoms and let the doctors know; regardless of whether they shake it off or not, it’s important information. I hear ya, have you talked to your doctor about your bladder? That is important information as well, and could possibly mean something else. In regards to heat/ cold intolerance, I am not sure, it can be a thyroid issue could be a hormonal issue as well, that would be good to mention to your doctor as well. I hear ya! I dont know if this will help you but there is something called coconut milk, its a hair product that can put in your hair after washing and it might help a little bit with drieness, or perhaps others have better tips around here too. Ive heard mixed things about biotin but I can say it will mess with your lab results if you are taking it even a fews days before your test. If you refer to my previous post on my page a couple people left some good links on there too.
Glad that you are getting vD and I hope it helps, that you are able to get the care that you need and recieve more answers. Sorry you are going through all these things as well. Be persistent.
I have told my gp numerous times I am struggling with the temperatures but she never really comments. Or doesn't know what's causing it. She started me on medication for my bladder. It's helped a little. I had an ultrasound but thst showed no abnormalities. Where would you get coconut milk from? Did you suffer the same problem too? Thanks I will have a look 😊 X
JennaShi. Has your GP said anything about your positive IFA (intrinsic factor antibody) test?
The test is highly specific and a positive result is a confirmed diagnosis of Pernicious Anaemia.
Treatment for the B12 deficieny inevitably caused by Pernicious Anaemia should commence immediately on diagnosis, irrespective of what your vitamin B12 levels are (serum B12 is a poor test for diagnosing B12 deficiency, which can be present even if levels are apparently 'normal', and as you have a confirmed diagnosis of Pernicious Anaemia, your B12 level will inevitably fall (because your body is not producing intrinsic factor so you cannot absorb vitamin B12 from food).
Treatment should commence with 6 x loading doses given on alternate days and then (because you have neurolgical symptoms) should continue every other day until no further improvement (this is the intensive treatment regime for those with neurolgical symptoms and not a lot of GP's know about this).
There are many cross-over symptoms between thyroid conditions, B12 deficiency, and other autoimmune conditions, so it may be difficult for you to work out what is causing your symptoms. Some of them could well be due to B12 deficiency caused by PA (thought your GP may well say that you can't have B12 deficiency if your levels are in the 'normal' range - though this is not correct). Some may be due to thyroid issues. And some may well be due to another underlying autoimmune condition (unfortunately, they do tend to arrive in clusters).
Giving you treatment for the PA is essential because irrespective of what symptoms are due to which condition (or potential condition), if the PA is not treated, this may lead to neurolgical damage and, untreated or under-treated B12 deficiency can lead to a condition called subacute degeneration of the spinal cord (but certainly not suggesting you have this).
I see that you've previously posted on the PAS forum, but I can't see that you've mentioned your positive IFA test (perhaps you didn't know about it at that stage?).
If you post there and say that you have a positive IFA test, folks can provide diagnosis and treatment guidelines, together with information about treatment regiemes and research evidence, that may help you to get your GP to treat this (as he most certainly should). Or if you send me a PM, I'll let you have some links.
Really sorry you're not having much luck with your primary doctor. My GP is not great (to put it mildly) so I know how difficult it can be when you have to struggle on your own to try and work out what's happening so you can get well again.
And yes...the positive ANA may be related to thyroid issues....but it may not. In light of all your symptoms (including the rash) think I'd be asking for a referral to a rheumatologist. It's possible to have what's called an 'atypical' presentation of autoimmune disease, where bloods don't show many markers of autoimmune disease - but it can still be present. It's also possible to have sero-negative autoimmune disease (it doesn't show up in antibody blood tests).
So...not suggesting that you do have another underlying autoimmune condition...but the only way to know for sure is to be seen and assessed by a competent rheumatologist - preferably one who does not treat by blood tests alone, but looks at the whole autoimmune picture (that is, looks at your symptoms and past medical history too).
Hi Foggyme, thanks for your reply. I did not have a positive IF antibodies test. In my comments I’m referring to Immuno flourence Assay test I believe its called. i did have a positive Parietal cell antibodies test but it doesnt seem to be very sensitive either. I just know that my b12 drops if I dont take anything for it.
Thank you, I agree and am sorry to here about ypur GP as well. We the best we can, huh? How are you doing?
Yeah, it doesnt seem that I will be seeing a Rheumatologist anytime soon so it must not be bothersome. I will see in time if anything develops and keep supplementing with the b12.
Ah ha, sorry, my mistake JennaShi...intrinsic factor test is often referred to as IFA.
Just an after-thought...you mention having GI issues somwondering if you’ve been tested for Helobactor Pyloir (gastric bacterial infection - quite common). If can impede the absorption of vitamin B12, cause some quite nasty GI issues and, if left untreated, cause gastric ulcers.
Must be some reason you can't maintain your B12 levels...but it can be quite a common problem for those with thyroid issues, too.
As to your case being 'no big deal'...please don't think that. You know your body and you know that it's not right, and you deserve to be well (or as well as you can be).
As to 'bothersome'...well...what we think is bothersome is often quite different from what doctors think is bothersome...and they’re not always right. If it bothers you, then it should bother them too.
As to me - like many here, I've had (am having) trouble getting a decent rheumatologist...but I've got plan and I'm getting there 😉😀.
Please don't give up and keep searching for answers...until you get them.
No problem at all Foggyme, I should’ve clarified on my part. As for the Gastro issues, I have been tested for H pylori (breath test) it came up negative as well as have had an endoscopy. My gastroenterologist found what he thought to be an infection with gastritis but was pretty confident it wasnt h pylori so I am to see him next year, he is not sure about the Parietal cells or autoimmune gastritis either butnit would make sense with the b12; however it seems I dont have a problem with my thyroid medication being absorbed or supplementation with b12.. so could be? Or possibly not getting enough meat (I think I am though).
Thank you for your encouragement, I appreciate it! And I hope you find a great Rheumatologist who will listen and give you the care you deserve. 🤗😀
Was it really obvious when you were diagnosed? Do you have thyroid disease as well?
Thanks, will try to keep a eye on it. None of tye doctors involved seemed to be concerned so I will wait and see what happens. I wrote a more specific comment to Sophie if your interested in reading it.
I was diagnosed with SLE based on once-positive ANA, dsDNA and marginally low C4 complement plus rash.
The SLE criteria include low platelets.
Autoimmune diseases like company, so one diagnosis doesn't rule out more...hoping you have a new doc soon. Wishing you all the very best, it's terrible being all at sea on the diagnostic odyssey xxx
I am sorry to hear of your diagnosis but it sounds like it was clear as day. I am glad to hear that are able to get this and help/ support through doctors. I most definitely agree, but thankfully we have the help and support of each other in groups like these. One good thing about doctors is they order labs so we will see if her thepry pans out in 3 months😀.
😮 that sucks I am sorry. It seems doctors wait until Its very clear and dont bother with early signs. It sounds like you have been through quite a bit to get to where you are now.
I was lucky not to have permanent damage (apart from my nose, but I lost my sense of smell pretty much when I broke it aged 9!) but you know, when you have a look at the criteria, you might find some clarity for yourself (and have evidential back-up for your next appts). Be informed, be well! xxx
Hi. I read your reply to Sophie but i know nothing about thyroid disease as I’ve been lucky to escape that so far.
Was my diagnosis straightforward? Yes and no. I had septic shock in 1990 following abrupt cessation of antibiotics due to a severe penicillin reaction. As i regained consciousness, the pain in my joints was epic and i was told then that this was caused by complement. At that time, Complement was a very successful diet of meal replacement drinks so it didn’t make any sense 🤣. As the years passed, joint pain, swelling and redness became regular visitors. I was phobic about hospitals so I diagnosed myself with RA and just carried on. Driving became tricky and i was referred to rheumatology in 2001. Apparently i had textbook presentation of lupus and was treated then and there. Bloods remained suggestive but not conclusive and i dipped in and out of hydroxychloroquine and steroids until 2011 when things got worse. Another rheumy pronounced me chronically under treated and i started methotrexate followed by Mycophenolate. New rheumy sent me up to see Professor of lupus in 2013 to ascertain my exact diagnosis and bloods remained as negative as ever. She concurred with my original diagnosis, luckily, and i believe that my low complement levels played a part in this as there are few things that cause low C3C4. I remain sero neg but with lupus-like and lupus-unlike signs and symptoms to this day! Does that help?
Wow, it sounds like you have been through alot!! I have heard that going through septic shock is rough but can’t imagine how you must’ve felt. Did you have an immediate reaction to the penicillin? My daughter and I also had a reaction but not that bad considering what you you went through. So ridiculous that doctors would blame it on the replacement drink.. clearly they are human but are smarter than that; they would’ve known I think and to shrug it off as that isnt very professional 🤦🏼♀️😠. I dont blame you for being phobic at all after what you went through, but am glad that you finally went in. It sounds loke your doctor sent you to the Rheumatologist and am glad that you got diagnosed. Are you feeling better or more relief in your body?
Yes that does help, thank you for sharing your story with me. I hope that you are recieving better care than you had previously received and things are looking up.
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Extreme fatigue, joint/muscle aches and pains and skin rashes are all common symptoms associated with lupus. Lupus presents differently in each individual therefore, no two people will share the exact same experience. To find out what criteria and tests need to be met in order to make a diagnosis of lupus, click here lupusuk.org.uk/getting-diag...
The Lupus Encyclopedia provides helpful tips and information on how to treat dry/itchy skin which is listed below:
•Take shorter baths and showers
•Do not use soap on most body surfaces, except underarms and private areas
•After bathing or showering, pat the skin dry; do not rub (rubbing removes moisturising oils)
•Avoid using fabric softeners. They irritate dry skin.
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