Not diagnosed yet...
I hope you don't me posting without a diagnosis yet. I am going to see a rheumatologist the end of this month. I was just diagnosed with Hashimoto's, had Grave's previously, and have been battling a slew of symptoms: horrible fatigue, joint pain that started in the knees and has moved to my hands, mouth ulcers, chest pain with deep breaths, photosensitive rash on my chest, dry eyes, anemia, and thrombocytopenia. My low platelets led me to be seen by a hematologist. My hematologist ran a plethora of tests, which I was very grateful for, I had a negative ANA but was borderline positive for anti-dsdna (reference range=negative is 0-30 and I had a 33). The hematologist is concerned that I may have Sjogren's because of the dry eyes. I am thinking it may be lupus due to the fact that the anti-dsdna is more commonly associated with lupus in conjunction with all of the symptoms listed above. Has anyone experienced anything similar? Also, has anyone had a negative ANA with a positive anti-dsdna?
Thank you for your time and I hope you all are well!
Welcome to WHL. People are welcome here in all stages of the disease, from awaiting diagnosis to those that have had it for decades.
There is a type of Lupus calles seronegative lupus, or ANA negative Lupus. It is not very common but it does happen. It can also appear to be negative if you are on certain meds for your other diseases. Many of the meds we take for AI diseases will alter our bloodwork (doing what they should) but it often makes it harder to diagnose.
Also keep in mind there is NO single test for Lupus. Lupus is diagnosed by having multiple symptoms/tests point you in that direction when everything else has been ruled out.
Hope this helps a little. Once again, welcome to our family and feel free to ask any questions you have. I would also suggests browsing through the "stickys" at the tops of each section. They have some useful advice
Thanks Tgal! That is what is making this so hard for me to understand. The Hematologist is stating Hashimoto's based on my very elevated microsomal antibody which was 1748.6 (standard range is below 5.6) and my thyroglobulin antibody was 56.5 (standard range is less than 14.4). I don't take any medications because my Grave's was in remission. All I am currently taking now is vitamin D and iron for vitamin D deficiency and anemia. I have appointments set up with Endo and Rheumy the last week of October, my Rheumy appt. is on Halloween-how fitting. That is what is so unique about this whole negative ANA situation. Regardless, I am looking forward to both of these appointments because I am not feeling well at all. I know they say that a lot of times they don't even test anti-dsdna when you have a negative ANA so I am very thankful that my Hematologist went above and beyond.
Thanks for letting me vent. Just want to feel somewhat normal inside and soon. I have 2 year old and 4 year old boys that are depending on me plus graduate school. I blame myself, like the stress of my current situation brought on these additional AI illnesses.
I hope you are well!
I am also glad that your doctor went above and beyond by running the additional test. Especially given the fact that, as Tgal mentioned, there is a form of Lupus that is sero-negative. Lupus comes in many forms and no two persons will have the same symptoms. Also, as you noted, it is not uncommon to have more than one overlapping issue occurring at the same time.
We are here to help you as much as we can, so this is a safe place to vent whenever you need to.
Please keep us posted on your test results and decisions made by you and your doctors. Best of luck to you.
Peace and Blessings
Thank you Saysusie! You all have been so wonderful. I feel blessed knowing that encouragement is available as soon as I power-up my laptop!
Rheum appointment did not go as planned. She doesn't think I have lupus or any other AI disease other than the Grave's. She stated that my "lupus like symptoms" may be due to the PTU that I stopped taking for my Grave's at the end of the first trimester of my 2nd pregnancy at the end of 2010. She also mentioned that perhaps my symptoms are due to parvovirus and that it could be in my system for a year. I'm not sure about any of this after all I am just the patient. I thought drug induced lupus resulted in higher levels of ss-DNA not ds-DNA. I realize that the anti-dsdna result I had of 33 was in the equivocal range but she barely acknowledged any of my other symptoms. She stated I should consider yoga for stress relief and can take Tylenol for pain. The anti-inflammatory meds, like naproxen, work better for me but she is afraid of continued drop in platelets, which I understand, but Tylenol doesn't help my pain. So frustrated. Thanks for letting me vent. :grumpy:
First let me say that I am sorry that your appointment did not go like you thought it would. I know we all hope that we will go in the first time and get answers but few of us actually do. I also want to clarify that I am not a Dr. so I have no way of knowing if you do or do not have Lupus or some other type of AI disease. I do know 2 things however.
1. Many other diseases look and act like AI diseases
2. Most people go month or years knowing something is wrong before they finally get someone to listen to them and get the diagnosis they need.
Having said those 2 things, I have posted 2 links below. One is about parvovirus and the other about DIL. Hopefully these will give you a place to start. Come back if you have more questions. we are here for you
parvovirus/fifths disease info:
drug induced lupus info