Disappointing twist

[JennaShi]

Hi all,

Just wanted to say thank you for your support and comments. I got all my labs back but one and have to say although they look good, I’m disappointed as I was hoping for something to show. Cbc is normal and my ANA at this point is 1:40 positive homogeneous, the lowest I have seen it besides negative and anti dsdna antibodies are <=200 (range >=200) whatever that means. My sed rate is at 10, the highest it’s ever been but it’s still normal.

She gave me a 40min appointment but I wrote her back saying we can go back to 20 if shes wants as I wouldn’t blame her and she said we can talk at my appointment.

All this to say that I’m not sure if I just don’t have lupus or if I’m not in a flair. For those that haven’t been following, I’ve previously posted, my dsdna, smith, rnp, cardiolipin, and phospholipid antibodies have not been positive from any results I have. I’ve got alot of positive ANAs, highest is 1:320 homogeneous. Low wbcs, low rbcs, anemia, fatigue, muscle aches, low platelets but not below 100k, 1 low c4 complement at 12, rashes that aren’t butterfly or discoid, ibs, mouth ulcers that may not be the right ones, random bouts of vertigo, genes that are commonly seen in Lupus (but she doesn’t care about those), anxiety, some paranoia dermatographia, post graves, Autoimmune gastritis, and small fiber poly neuropathy etc.

I’m having some anxiety that I will be brushed aside again. I know that ANAs go up and down, but all my labs look good this time and I guess I’m just wondering if this is a lost cause?

Thanks.

[Spanielmadlady]

Dont lose heart my lovely.keep your 40 min appointment and make the most of it.a good rheumatologist will look at you as a whole i.e symptoms ,history etc and not just as a set of numbers from the path lab.if you are brushed aside again you ask for another opinion.youve got to stand your ground as you know how you feel .I've got my🤞for you .keep your chin up weve all been where you are now 😘

[JennaShi in reply to Spanielmadlady]

Thank you Spanielmadlady, you’re words of encouragement and support mean alot! 💜

[KayHimm]

Spanielmadlady is right. The rheumatologist will look at your history and the complete picture. There may be things you are missing that she will pick up on. The physical exam is important too.

If the doctor says she doesn’t think you have lupus, ask her what convinces her of that. That will give her the opportunity to describe her reasoning.

Xk

[JennaShi in reply to KayHimm]

Thank you Kay, you’re right and I hope she does. There’s no reason to give up even if labs don't give more answers. And we should be able to have a mature conversation and be able to ask why/ why not. Hearing your story and talking with you all has given me some encouragement, thank you again. I was a bit anxious/ ashamed of my results for fear that she thought i was wasting her time, but feel better to talk about it now. 💜

[Hidden in reply to JennaShi]

Hi there. I have Scleroderma (positive bloods now) and other CTD. In my experience all blood markers can be relatively normal when not flaring.

For instance some of us have autoimmune thyroid diseases and when they are well managed this can lower our ANA I’ve discovered. Mine only showed high when my hypothyroidism was not optimally treated so I’ve learnt that it comes into my overlapping autoimmune diseases picture too. There are many variables but once you’ve shown clear positive then even a weak positive should be taken into account.

That said I have had a terribly long journey with many doubters and a feeling of being a fraud. But it only takes one good consultant to get me back on track with accepting and believing in myself now.

Now no doctors doubt I have overlap CTD - but I still always expect the worst from bitter experience. In fact I’m amazed at how kind and supportive my doctors have been recently despite my ANA only being a weak positive 1:80 these days. It used to be borderline 1:40 for ages when my Hashimoto’s was well controlled and normal when I was on steroids and other treatments. So I wouldn’t worry too much about your blood results. If your rheumatologist is good then she will be looking at the person before her not just your blood results.

[JennaShi in reply to Hidden]

I’m sorry it has been a difficult and long journey. I agree that autoimmune thyroid disease can make the diagnostic process more challenging and cause alot of doubts. I’m glad you were referred to a Dr. who challenged those doubts and have since found found the importance of getting your thyroid treated properly. I too have an autoimmune thyroid condition and recognize that when your not optimal it can add negative effects to your body on top of other issues. In my case, my thyroid has been treated almost optimal since 2017 and optimal since 2018 and first high ANA in 2019. I’m realizing even more so that everyone is different and different things work for different people but helping each other is no less valuable and the support of eachother so appreciated, especially in times of uncertainty.

[Hidden in reply to JennaShi]

Yes I wasn’t meaning that sub optimal thyroid treatment might be reason your bloods look better (worse) - just that there are so many different variables and this was one I’ve noticed about myself. I think the fact that your Rheum wants to give you 40 minutes is a good sign probably 🤞🏻

[JennaShi in reply to Hidden]

Thank you for taking the time to share and explain with me 282523. I appreciate you sharing your story and what you’ve discovered about your health and connection with your thyroid. I am glad that you are being taken seriously by doctors and receiving good and treatment.

I wasn’t sure if you were just sharing and or implying something about the thyroid and thought I’d respectfully respond so I hope you don’t take offense. the thyroid has been a long debate between myself and couple rheumatologists so I guess it’s still a bit of a tender subject and have learned to keep records or results as proof. I agree there are different variables at play and always good to have the thyroid checked.

[Hidden in reply to JennaShi]

No of course no offence taken. It’s just that I know everyone on thyroid or B12 related communities always bring everything back to thyroid and b12 and I wanted to let you know I’m not doing this myself! It was just something I read here recently about ANA or on a Facebook group perhaps that made me aware of the connection.

I agree it’s a thorny subject to take up with doctors so I’m afraid I mostly don’t. Just occasionally I have to be very firm if they try to lessen my dose -,which they would do in a heartbeat if I hadn’t found an endocrinologist once who stipulated by letter to them that I was in charge to and said I could always phone him again if I needed back up.

I can’t really say I’m always taken seriously though. Nor should always be perhaps. Which is why I keep hard copies of every radiology report and my blood test results where possible (not currently possible). It is how I self manage and make decisions and do detective work for myself really.

And not being seen face to face these days is tough as it’s harder to convey how unpleasant many of our invisible symptoms are to live with. So of course we look for physical manifestations now.

For example I’ve just made a total twit of myself with my dermatologist about some new dark spots which turn out to be ageing thingies.

And also yellow ears which I think are weirder than weird - but all my friends seem to think aren’t that yellow and my dermatologist ignored photos of these just saying she could see nothing to worry about at all. She says it will be easier to look when she can see me in person again but that’s not until February!

So embarrassing - but honestly my outer ears are permanently yellow now and I genuinely would like to know why?!

So you are right to pick your battles and highlight the most important symptoms which could aid diagnosis - not just throw in everything as I tend to do! Best of luck xx

[JennaShi in reply to Hidden]

No problem at all. I agree that there is alot talk about it within the groups and don't doubt it does have an impact not to mention its importance when first getting checked out because people who are hypothyroid do get tired and easily fatigued as the thyroid plays a huge role in our health. B12 is also very important as it can also cause issues that overlap with issues that are also seen in hypothyroidism and lupus, as people have mentioned on here that it's common to have stomach issues and b12 is absorbed in the lining of the stomach.

I'm so glad to know that you came across that endocrinologist, yeah, often like b12 (depending on cause) the treatment is not meant to be titrated off of. Its something that needs to be taken for life whether the cause is autoimmune or not. The hormones are necessity to our well being. You mentioned not being taken seriously and I feel the same way as this is unfortunately very common for alot of us and being apart of these groups are so great because we can talk with others struggling through similar diseases and with our own research we can go back better prepared at the next doctor's visit and with better understanding that we may or not have gotten from our appointment.

I'm sorry you had a tough time at the dermatologist, believe me, I've been there myself and it happens to best of us. I don't know about you I try to remind myself that they see alot of people in the day and will probably not remember the day to day. Our concerns are valid and there's nothing wrong with asking about something that bothers you and hopefully your doctor will be able to answer your questions about your ears. I know the feeling, I had shown a picture of my fingers that were discolored to the second Rheumatologist and she looked at them and said she didn't see anything and I felt dumb. Even if its embarrassing, I think it's worth mentioning and those written previously, be persistent and maybe try different lighting for a photo? I hope you get answers soon. I have my appointment with her tomorrow and I'm nervous and anxious again as we have to drive about 3 hours away and a three hour drive with fear of being shrugged off sucks but am trying to change my perspective and think she's trying to be helpful and not against me; she just has to follow the criteria rules too.

[Hidden in reply to JennaShi]

Best of luck for tomorrow JennaShi. I should say that the dermatologist in question has been my knight in shining armour - a woman one at that. I think my photos of my ears were pretty good as my husband took them for me and he’s the one who noticed them. I guess they might be part of my Scleroderma/ overlap CTD and this isn’t her area of special interest at all as she readily admits.

Similarly my rheumatologist admits that she isn’t an expert on Scleroderma - Lupus is her thing. But I really do trust both, not with my life, but as doctors who both readily admit that they don’t know everything, or even that much.

So if this rheumatologist tomorrow makes it clear she believes you but doesn’t have all the answers - that will be a very good start I would think x

[JennaShi in reply to Hidden]

Thank you! I'm unsure if you read my post but it went well and am diagnosed with UCTD, and relieved she was really nice and didn’t have to prove anything.

I’m glad you have a good dermatologist and rheumatologist, and it sounds like your husband is providing you with great support and taking note of new symptoms. That is good that she’s being honest with you about it. I hope that you get some answers regarding the color, my first thought is jaundice and liver, but I don’t know much about that either myself. I have weird lighting in my bathroom and sometimes pictures get distorted (that is why I mentioned lighting).

[Muff20]

Poor you but I am much the same. Every test comes back negative but I am given hydroxcholriquine now. If it helps just had another breathing test. Mostly normal again but still having trouble breathing 🤔 after 7 years of brain scans and blood test at least I know I am not alone since joining groups like this one. Keep going, if your consultant is nice just preserve. 😁🤗

[JennaShi in reply to Muff20]

I hope that you get some answers soon and that the medication helps! I’ve been told that it can take quite a while to get a diagnosis, especially for those who don’t fit the criteria. Yeah it’s disappointing but their right, if she’s a good doctor, she will take time to look at everything and not just the stuff she ordered. I am glad she didn’t cancel our appointment! I hope that your doctor is also looking at the bigger picture and to try and figure out what is causing your symptoms.

[Hidden in reply to Muff20]

Just wondering if you’ve been tested by special echocardiogram for pulmonary hypertension - which can cause breathlessness that doesn’t always show in pulmonary function tests and wouldn’t show in brain scans or blood tests?

My late mum had this condition but it wasn’t discovered until too late so I would be sure to ask your rheumatologist if it’s a possibility if it hasn’t been excluded yet.

[Muff20 in reply to Hidden]

Hi, yes I am questioning pulmonary hypertension. Looks like they are going to do another lung test for diaphragm breathing problems and see what that shows. The hospital will only do 1 test at a time, it takes so long to get anything done! If the next test doesn't show anything I am going to ask for more tests for pulmonary hypertension. If I don't keep pushing I think they would be happy to leave me. My Mum was ill for years with no real answers I am determined but the system is so slow. I have been trying for 7 years to get answers and I have had breathing problems for over 4! Sometimes I think they are slow on purpose and hope we all go to save money 🤔☹️

[Hidden in reply to Muff20]

I know what you mean. I was referred for my first echocardiogram 10 months ago now and zilch. 🤷🏼‍♀️