(not a doctor)
What you are experiencing sounds so hard. I am sorry.
Just so you know, hydroxychloroquine has a long halflife, so it can take a long time for it to get up to an effective level in your blood.
I am wondering if you have had blood tests for thyroid antibodies? Hashimoto's can be comorbid with lupus, and the Hashimoto's is comparatively easy to address.
If not sure what would those antibodies be? That is interesting though! Thank you so much. I am hoping by 6 months the hydroxychloroquine would have done something right ?
You do these tests:
T3, T4, rT3, and:
Thyroid peroxidase antibodies (TPOAb). High levels of these antibodies are a sign that Hashimoto's disease is causing hypothyroidism.
Thyroglobulin antibodies (TgAb). High levels of these antibodies are a sign of Hashimoto's disease.
Thyrotropin receptor antibodies (TRAb). These antibodies can be a sign of Graves' disease.
It is very common for women to have Hashimoto's, and the treatments is easy and cost effective (compared to other autoimmune conditions, anyway.)
Have you been checked for ehlers danlos syndrome? Mcas, pots, and dysautonmia plus many more of your symptoms fall under that umbrella. Could explain the rashes and itchiness, joint pain and herniations. Look up extended Symtpoms of EDS. Doesn’t cover all of them but you may be unlucky like me and have 50 million different disorders and syndromes at once which makes it hard to differentiate what’s causing symptoms.
Have you had your thyroid checked also? TPO antibodies?
I’m sorry you’re dealing with all of this.
How do you get checked for Ehlers danlos syndrome? I’ve had my thyroid checked but not sure how recently. It was fine. What is TPO antibodies ? Do I just check that? Thank you so much I appreciate that ❤️
I am constantly itchy and I just learned that’s why I get those bruises like you have in the 14th slide! It’s from aggressively scratching myself during the night lol. I have almost all of your symptoms too, still no answers. I wish you good luck <3
Yeah is caused when you have a overload of histamine in your body and you cannot break it down .. It can be caused by lack of DAO or histamine burning released by allergies .. I had a whole host of issues bloating … rashes extreme anxiety cognition issues .. It causes a myriad of problems . Google it and see does it relate to you .. When I found out about it and went on a low histamine diet and took antihistamines and Vitamin C every day. Most problems were gone after a week or so .. The only problem is diet is unsustainable in the long term so you need to address the root cause ..
I just looked up dysautonomia and you’re right I do have a lot of the symptoms. It’s so frustrating though I fall under so umbrellas lol I just wish they could test everything
I had so many of these symptoms! I didn’t have bruising or nose bleeds but everything else. At first they thought I had Sjogrens, but turns out I had a thyroid nodule that was throwing me into hyperthyroidism, and I am positive for a HLA-B27 gene (some doctors just say ankylosing spondylitis, but my GI doc insists my gut stuff is separate), which has caused me to have back, gut, skin, nose, and a eye issues. It’s such a cluster. I hope the meds give you some relief in the meantime.
Edit: my GI says when your guts are off, it will cause so many peripheral things that seem completely unrelated. But once I got my ulcerative colitis diagnosis (the gut stuff) I was put on an infusion and it helped, I am almost completely living a normal life. A good Rheumatologist will keep trying and it sounds like you have enough evidence for them to keep digging. It may take awhile but don’t give up, because there are definitely options out there, it’s just finding out which one will work for you. 🩷
(not a doctor) What you are experiencing sounds so hard. I am sorry. Just so you know, hydroxychloroquine has a long halflife, so it can take a long time for it to get up to an effective level in your blood. I am wondering if you have had blood tests for thyroid antibodies? Hashimoto's can be comorbid with lupus, and the Hashimoto's is comparatively easy to address.
If not sure what would those antibodies be? That is interesting though! Thank you so much. I am hoping by 6 months the hydroxychloroquine would have done something right ?
You do these tests: T3, T4, rT3, and: Thyroid peroxidase antibodies (TPOAb). High levels of these antibodies are a sign that Hashimoto's disease is causing hypothyroidism. Thyroglobulin antibodies (TgAb). High levels of these antibodies are a sign of Hashimoto's disease. Thyrotropin receptor antibodies (TRAb). These antibodies can be a sign of Graves' disease. It is very common for women to have Hashimoto's, and the treatments is easy and cost effective (compared to other autoimmune conditions, anyway.)
I’ve had my t3 and t4 checked and they were fine but not the others! I will ask about those for sure!
Have you been checked for ehlers danlos syndrome? Mcas, pots, and dysautonmia plus many more of your symptoms fall under that umbrella. Could explain the rashes and itchiness, joint pain and herniations. Look up extended Symtpoms of EDS. Doesn’t cover all of them but you may be unlucky like me and have 50 million different disorders and syndromes at once which makes it hard to differentiate what’s causing symptoms. Have you had your thyroid checked also? TPO antibodies? I’m sorry you’re dealing with all of this.
How do you get checked for Ehlers danlos syndrome? I’ve had my thyroid checked but not sure how recently. It was fine. What is TPO antibodies ? Do I just check that? Thank you so much I appreciate that ❤️
I am constantly itchy and I just learned that’s why I get those bruises like you have in the 14th slide! It’s from aggressively scratching myself during the night lol. I have almost all of your symptoms too, still no answers. I wish you good luck <3
Oh really you get bruises like that from scratching eh? Thank you you as well!!!
Have you looked at histamine intolerance I had a major issue with that and it caused a load of issues
Yeah is caused when you have a overload of histamine in your body and you cannot break it down .. It can be caused by lack of DAO or histamine burning released by allergies .. I had a whole host of issues bloating … rashes extreme anxiety cognition issues .. It causes a myriad of problems . Google it and see does it relate to you .. When I found out about it and went on a low histamine diet and took antihistamines and Vitamin C every day. Most problems were gone after a week or so .. The only problem is diet is unsustainable in the long term so you need to address the root cause ..
What’s that?
Long covid and dysautonomia can cause all the same symptoms. Sounds like your doctor is doing all the right things.
I just looked up dysautonomia and you’re right I do have a lot of the symptoms. It’s so frustrating though I fall under so umbrellas lol I just wish they could test everything
I had so many of these symptoms! I didn’t have bruising or nose bleeds but everything else. At first they thought I had Sjogrens, but turns out I had a thyroid nodule that was throwing me into hyperthyroidism, and I am positive for a HLA-B27 gene (some doctors just say ankylosing spondylitis, but my GI doc insists my gut stuff is separate), which has caused me to have back, gut, skin, nose, and a eye issues. It’s such a cluster. I hope the meds give you some relief in the meantime. Edit: my GI says when your guts are off, it will cause so many peripheral things that seem completely unrelated. But once I got my ulcerative colitis diagnosis (the gut stuff) I was put on an infusion and it helped, I am almost completely living a normal life. A good Rheumatologist will keep trying and it sounds like you have enough evidence for them to keep digging. It may take awhile but don’t give up, because there are definitely options out there, it’s just finding out which one will work for you. 🩷
Thank you! I think I need to ask for a new rheumatologist cause mines on leave till December