Oh Serenity, I once tried to go OFF plaquenil (before taking Isoniazid to lessen the burden on my liver). It was a very bad idea. I got the symptoms Lynnwood described going off the plaquenil and had such bad heart problems that I went right back on. And I was only off for a day or so. My legs swelled up really bad and I got edema everywhere.
If the plaquenil is also helping your thyroid disease by suppressing the autoantibodies that are attacking it or otherwise killing or suppressing a unknown agent that may be worsening the problem, then perhaps the thyroid med might be best to adjust.
I really have gained a lot of respect for plaquenil because it not only suppresses the immune system but fights disease. There are many docs that believe that there is a disease element or trigger underlying autoimmunity in some cases and if this is true, plaquenil would have an advantage over many other meds, including steroids. Its funny, I always get colds or infections on steroids, but seldom on plaq, no matter how much I take. It truly was a wonder drug of its time. It also treats many conditions. Docs don't know how most drugs work, especially antidepressants and antiseizure drugs, and with a drug like plaquenil that is effective against so many conditions, they may find new uses for it all the time.
Docs dont even know what causes autoimmunity, so that is the more relevant problem, for they can't treat something when they don't really know what causes it and are just developing research and technology to study it in depth.
I know you are suffering with the double burden. But maybe your pituitary and adrenals might be contributing, so a thorough endo checkup might help. I have the same problem as you, hyper/hypo as the thyroid slowly dies. Lovely. Also blood insulin to check for hypoglycemia is good. Estrogen blocks synthroid too. Mayo checked all my stuff, telling me that the thyroid and adrenals shouldn't be treated unless the pituitary is thoroughly checked. You might ask for a thyroid scan too, sometimes people with nodules go hypo/hyper--my mom did. Do you have a blood sugar test kit? You don't need a prescription and it helps alot to test that too and they are really cheap, like $18 bucks and well worth it even if you don't think you have diabetes because the sugar can go high andlow on steroids.
I will always keep a blood sugar test kit in my first aid kit. Its just such a simple thing to have and helps with figuring out if someone has low blood sugar from forgetting to eat, like my son, who is not diabetic, but gets panic attacks.
Most of us here have thyroid problems, diagnosed or not, and certainly have experience with steroids. Its just that the docs have their good reasons for pushing the plaq. It seems like you know it's the thyroid or something like it. I know endos can be lousy, I have yet to find a really good one. The clonazapam I take at night (a small dose) gets me through the rough spots and my doc gives me enough to double up on panicky days or when i cant take synthroid for a scan, or can't get into the office to have my hormones adjusted.
I need to eat with plaquenil, if I dont I feel bad. Also, milk is an old standby when meds seem too strong as it supposely flushes stuff from the body.
Lynnwood gave you good advice. I know its hard, but tryto remember its just the meds, through the worst of it. Be careful if you drive, and try to get in to the endo or doc of your choice.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids