Antichromatin antibodies

First, let me start off by saying that I am not a doctor. When you mentioned various areas on your body had inflammation, I too experienced a similar situation with inflammation in my body after having 18” of my colon removed due to suffering from severe diverticulitis for many years. I then was diagnosed, about 7 months later, with Hashimoto’s/Hypothyroidism. It was then that I had my Thyroid levels checked and found out that I had both Hashimoto’s and Hypothyroidism. I was first put on 100 mcg of Synthroid, my weight began to come down slowly and I was still so tired. My doctor then increased my Synthroid to 112 and added another drug called Cytomel, which really got things moving in the right direction, but then I began to feel shakey from too much medication. I went off the Cytomel and am feeling better, but will be starting 100 mcg of Synthroid next week as I still at times feel a bit shakey. Lisinopril is a blood pressure medication. Do you have high blood pressure? I would talk to your doctor about testing your thyroid levels. I would ask to have my TSH, T3-Free, T4-Free, TPO Antibodies tested. It’s a simple blood draw test and you should have your answers after this. I know that Hashimoto’s is an autoimmune disease and so is Lupus. I also have been told that once you have one autoimmune disease, it’s easy to contract another one. Lucky us right??? You’re on the right tract, just keep advocating for yourself. I have found that if I ask my doctor to run a test for me, he’ll do it, but he doesn’t always tell me to have a test…do your own research. Good luck!

Yes I have high blood pressure and I've found it to be increasingly difficult to get any doctor pretty much to listen to your questions and concerns and take into consideration someone without a PhD might actually know what they are talking about considering it is the patient having to live with such debilitating diseases. It's like they don't want to find the cause of diseases/sicknesses anymore and I'm finding this more often than not. For over a year I've been doing my own research not only for myself but in hopes to save my Aunt and who is my mother's identical twin sister. She had been fighting lung cancer up until about 4 months ago when she finally reached remission only to dx with a brain tumor a month later. How this was not caught earlier on idk. But a few weeks ago she lost her battle and I believe I may suffer the same fate or someone else for that matter the longer this is let. There are several family members present and past going generations back on my mothers maternal side that exhibit a lot of the same signs, symptoms, and illnesses. At this time I have an enlarged cervical lymph node and if im correct hopefully ive caught this early on. The photos are my theory of of what I believe our family has and presented to Question.Al...

Epigenetic's and the RET gene....

I have had sle for 40+ years and have studied and experienced it in depth. Here’s my assessment of your situation: you mentioned you have had signs and symptoms for years. Could you elaborate on those with a ballpark timeline? Many people in your family have exhibited similar symptoms. Were any of them diagnosed with autoimmune diseases? There are lots of possible connections in your case. Many people with sle are allergic to sulfa drugs. Both Lisinopril and HCTZ can cause drug induced lupus. (DIL) Depending on the timeline, what started first, etc I am wondering if you have had symptoms of lupus for years, then perhaps the medication made it worse?
Symptoms of lupus can precede the lab evidence like positive ANA by years. I had signs and symptoms for a decade before my ANA turned barely positive. You really should see a rheumatologist with a timeline, list of all signs and symptoms, when you started the BP meds and family history. Take pictures of any rashes, sores, or color changes in extremities. ANA should be repeated plus a full blown autoimmune panel, anti histone antibodies for DIL, tests for Hashimotos, urine tests, CBC, and basic metabolic panel plus inflammatory markers. A skin biopsy by a dermatologist would help if the sore on shoulder persists. I would encourage you to be proactive and assertive at getting this done. Autoimmune diseases are difficult and rarely follow the textbook course. You’re likely going to be dismissed unless you ask for what you need and persist with finding out what is wrong. Good luck and I hope you get answers soon.

Yes after my nasal reconstruction sx I developed these sores on my face on and around my nose and thought this was the result of dissolvable suture that didn't dissolve and my body was rejecting back out through my skin bc that's what it felt like. Heart failure at age 33 with fatal low potassium level, brittle bones with numerous fx's, leg swelling, enlarged left atrium with regurgitation of mitral and tricuspid valves, hyperpigmentation on my face and chest. There a 3 people on my fathers side with Crohns disease and one person dx at this time with Hashimoto's on my mothers side. I believe I have numerous autoimmune disorders besides sle. At the moment I'm having to see a cardiologist for postural orthostatic tachycardia. I had allergic to sulpha first at around age 10 also.

@mkempson42 Marcy, if your doctor isn’t being of any help, I think it’s time to get a new one. You can contact the Genetic and Rare Disease group: https://rarediseases.info.nih.gov/. Or the National Organization for Rare Diseases: https://rarediseases.org/. They both have lists of providers who specialize in rare diseases. Or you can try one of Mayo’s Care-Network hospitals:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
Is there a reason why you couldn’t look up one of these agencies tomorrow? Will you let me know what you learn?

Marcy, you have so much going on and I am sorry your problems have not gotten someones full attention! Some connections and questions for you: did the cause of your CHF get figured out? The most likely guess is it could be a cardiomyopathy which is autoimmune. The atrial enlargement is likely due to the mitral regurg, since blood is leaking through that valve, flowing backwards into yhe left atrium. Of potentially more concern is the tricuspid regurgitation which could signal pulmonary arterial hypertension (PAH). These issues should all be addressed by the cardiologist. PAH is treatable and early detection and treatment is important, so you should get a lot of mileage out of the cardiologist consult. The POTS will also be addressed there.
I’m wondering if you could have a malabsorption issue (low calcium, potassium) if those are still a problem. Hashimotos is treatable also. Perhaps the cardiologist can help you get a good rheumatologist to deal with the possible SLE, likely causing the hyperpigmentation and perhaps nose sores. Keep in mind that I am speculating here and just trying to make sense of some of your concerns. Please keep us updated on your progress. I think you’re on the right track and on the brink of getting much needed help!

I'm now doctorless at this time due to dismissing my most recent primary. I haven't the energy anymore to try and change someone's perspective who as health professional in my opinion should not to be so eager to excuse, dismiss, and ignore their patients symptoms and concerns which is exactly what he tried to do numerous times and told me he would see me back in 3 months and having to remind of issues still unaddressed and now taking a different approach. You treat me like an option I'm going to give you a choice.

I've not had it so easy since this all began and from whatever the motivating factor was for the hospital and my attending physician. But from their negligence and medical malpractice feel like they took a huge part of my life and they took away any hopes and dreams I had for myself by allowing me go undiagnosed with no resolution and continually to be judged and medically gaslighted by a mess of what little bit of health records that I have been able to obtain. This one in particular that I keep resorting back to find it very disturbing that I was never told of the results and was a few months prior to my hospilization for heart failure. I found it about 8 months in my medical records......

The reason I say this about my ekg...is bc it looks an awful lot like this one....